Taking an educated gamble really paid off for me. When I was first diagnosed with widespread lung metastisis that could be treated neither with radiation or surgery because it affected both lungs in all lobes, I was pre-menopausal, and my estrogen positive breast cancer had to be treated with Tamoxifen and Lupron. They were drugs to shut down the estrogen that was fueling my cancer. All that happened was that the lung mets didn't grow. There was no improvement.
A few months later, I had to have a total hysterectomy because of a partially related situation. Afterwards, I told my oncologist that I wanted to switch to one of the newer class of breast cancer drugs; and aromatase inhibitor, that could only be taken by post-menopausal women. He agreed to my request. When I brought my next set of CT films 3 mo later, he declared them "spectacular", and within a year and a half, I had no evidence of disease. I have to say that I still feel a bit smug for having taken the ropes and driven myself away from a cliff. I've been in remission since August, and it feels really good.

Sent by Nancy K. Clark | 7:34 AM ET | 05-23-2007

Another great topic.... I am a believer that each of us in the cancer fight MUST be our own advocate. We must become educated and informed about our cancer; its treatments; current clinical trials, etc. so that we can discuss, at least at some level, with our doctors the options and alternatives available to us. Unfortunately, some doctors are not willing "to try something new" even if the patient is and knows the potential risks. We must be persistent and even get second and third opinions before we choose a course of treatment. No one doctor has all of the answers!!!

The cancer fight is so very difficult. What works for you doesn't work for me even with "identical diagnosis" (probably is not identical but looks as though it is at the current assessment levels). I believe that if one treatment fails, move to another one and then another until YOU decide that enough is enough!. In the melanoma world, interferon is the gold standard for treatment. Statistically, its success rate is abysmal BUT it does work in some patients. Why only in a few does it work? Therein lies the answer to this particular cancer and perhaps successful treatments for all who have it.

Interferon didn't work for me so I moved to radiation which also failed and then went to a vaccine which also failed and now I'm taking another drug. So far so good....

Be an advocate; be persistent to give the folks in the garage time to bring forth another treatment..buying time is a part of the process.

Blessings and prayers, Leroy.

Sent by Al Cato | 8:29 AM ET | 05-23-2007

I'm so thankful for those guys in the basement myself. 10 years ago without the use of Rituxan I would have died from my cancer (primary mediastinal large b-cell lymphoma). Now, I have an 80% chance of never seeing it again. Another cool thing is that the drug has very few side effects. Bonus! Probably some poor nerdy kid that I teased in grammer school invented it! LOL! That will teach me.

Thanks for sharing all your great info. You help so many without a doubt.

xo

Sent by Lori Levin | 8:38 AM ET | 05-23-2007

Thank you Leroy for addressing this issue.

Ask your doctors questions--NEVER feel like you're asking too much... or that your question is not important.

It is YOUR body, YOUR health, YOUR care.

I always tell my patients that it is a 'team' effort, and they should be comfortable with their physicians, and care. If you are not comfortable with your situation, see how you can rectify it.

Do not be afraid of the white coat. We are people too.

Again, RFA is done by radiologsits... most academic institutions do this procedure. Only certain people, types of cancer, depending on several variables (histology, stage of disease, prognsosis, performance score of patient, etc...) go into decision making on if a sitaution can be treated.

Cancer isn't a cookie cutter disease.

It is a buffet with a myriad of options and choices.... but remember, you have the ability to figure out what you want, and with what you are most comfortable with. If you don't like the green beans, don't eat them.

However, this said, I see some people who go to A LOT of doctors before deciding their care... this is good, but I think too many differing opinions at times, makes it even more difficult for the patient and family.

Whew... okay, off the soapbox.
Just wanted to share

Sent by Krupali Tejura MD | 8:56 AM ET | 05-23-2007

I totally agree that each of us needs to be our own advocate. I know I would not be alive today if hadn't pursued the options. None of them have offered a cure but they have given me two great years. I have gone to surgeons when my oncologist hasn't thought it was "advisable" and received those looks that say go ahead but it won't help. So my advice to everyone is just like yours, keep asking questions, continue to educate yourself through literature, the internet,and blogs. Our doctors want what's best but they also often follow the same course with all patients and we know we are all individuals.

Sent by Dona | 8:59 AM ET | 05-23-2007

Leroy;

Thanks for cheering us on, ???in the basement.??? Recall that I???m a biotech entrepreneur ??? we like to say that we???re like two guys in a garage. And I still have my teddy bear on the desk ( post January 19 ) as a reminder of what we???re trying to do here.

The advance of science has a huge role to play in this drama and I???m happy that it???s getting some air time. I???ve observed that many of my friends with cancer ??? out of necessity -- are very well informed about new treatments and protocols. They have become scientists.

You???re right that something new always comes along, with the passage of time. In 1950, cobalt radiation was the state-of-the-art treatment for breast cancer. It must have been like ground zero at Hiroshima, but without the blast. Now, we find much more selective; specifically targeted; and highly effective therapies.

But??? this means that more breakthroughs will be needed in the future, since we sub-divide the target population into a greater number of specific categories.

I echo the question posed by Dr. Doug Blayney, of the American Society of Clinical Oncology. ???Who Will Do The Work ???? His editorial in the March 2007 issue of Journal of Clinical Oncology, accompanies an article by Erikson and colleagues pointing out a looming shortage of oncology professionals in the decades to come.

This mirrors my own observations in relation to science careers ( which is the root of these discoveries we all depend on ). It breaks my heart to see new generations of middle-school students turning away from science in favor of an easier, more immediately rewarding career, that doesn???t require years of advanced study.

So, who will do the [science] work in the future? And don???t forget that doctors and nurses are scientists, too. For everyone else, a little knowledge of basic science will help in asking those important questions, as an informed consumer in cancer world and discerning the answers.

Of course, it only takes a few, but we should all be concerned about who will keep the future pipeline filled and take the long view.

Sent by Emile Bellott | 9:06 AM ET | 05-23-2007

i am quite sure that all of the people that are a part of this blog understand and know all too well how we have to be our own advocates in any medical situation. we are a society that questions everything, and rightfully so. What surprises me , are the persons living with an illness that do not question all that is avail to them and their loved ones! i feel very sorry for their lack of knowledge. i have learned that there are persons in this world that prefer to remain in denial and are fearful of asking their doctors questions. I also feel that doctors are so extremely busy (not all) and tend to not address all of the medical concerns and emotional needs of the patient and their caregivers. what is the solution? can there be a solution? i do not have all those answers but i do agree that we can NEVER stop asking the questions for the answers we are looking for!

Sent by marianne dalton | 9:11 AM ET | 05-23-2007

Good Morning Leroy. I'm right there with you...although I have not experienced a recurrence the probability is pretty hign. I am always looking over my shoulder. I would not be a candidate for tamoxifen or other AI's, I would not be a candidate for herceptin, as my tumor was hormone receptor and her2neu negative. RFA offers a little bright spot. And I hope more bright spots come. Watching your documentary was so very hard for me, because up until the RFA procedure, we knew you were on a downhill slide. It was so very sad. I was delighted to see you granted more of that precious commodity, time. I am struggling with my insurance company, which will not pay to have my implant surgery corrected. I have written my governor, have spoken with the state health care advocate, the bureau of labor, and my doctor's office. Now a new round of letters to the local tv station and to patientadvocate.com. I've been through so much and have to fight now for what is mine under the law. I wish they could make this easier after all we've been through.

Sent by Alycia Keating | 9:52 AM ET | 05-23-2007

Aloha Leroy,
Thanks for a great topic again. It hit close at home. I am plodding through my third chemo treatment this year and hoping for the best. While I'm pretty optimistic about this treatment,I am still looking at backup plans. Having moved through the buffet line of plans "A' "B' and "C" I am working on developing plans "D", "E" and "F".
I too am hoping to hang in there until that magic bullet is found and I know I am not alone in the waiting room of cancer warriors. But you know, it is not a room for those who are afraid of the dark.

I heard a talk by an oncologist on Communication for Families with cancer. He observed that all the years he has been an oncologist(which are many)he hasd found that the patient and the family all have the same identical fears. So he concluded that one should not be afraid to voice their fears or thoughts because there is nothing that can be said that hasn't passed through the thoughts of ones own family.
I found that interesting as my biggest fear is that my doctors will give up on me..my husband's fear is that I'll give up. My doctor said he doesn't want me to lose hope when we hit a road block. Isn't odd.. we all have the same fears. It surprised me. I know that I get worn down sometimes from having to manage the effects of chemo treaments but I'm not giving up. I plan on hanging on for as long as I can. I just don't want anyone to give up on me.

Sent by Susan | 10:45 AM ET | 05-23-2007

My post operation meeting yesterday was encouraging. My PSA (prostate specific antigen) result was zero. Pre-op was 6.15. I am in a wait and watch mode with the next PSA in late August. There are cancer cells in there as indicated by biopsies during the surgery 3 months ago.
So, I will be living with cancer. It is surreal. I take considerable comfort from your blog. It is the first thing I check out after breakfast. Also, the Ted Koppel program was outstanding. Thanks again.

Sent by John McCrillis | 11:00 AM ET | 05-23-2007

Leroy: In your last paragraph you say, "In the end what happens to us is up to us." I'm not sure I completely agree. When Dr. Tejura said that cancer is not a 'cookie cutter' disease, she was not overstating it. There is SO much to know about all the different cancers and the treatment options available. It's often daunting to me to try to figure it all out, and I am a health care professional myself! How can the lay person hope to ever know enough? Also, making the decisions that may make the difference between life and death for ourselves often comes at a time when we are sick, emotionally depleated and unable to think objectively. One thing I have learned that I frankly never thought about before I got cancer is that the doctors who are relatively behind the scenes are critically important to our care. The radiologist who performs the needle biopsy....whom you may meet minutes before the procedure and probably never see again. The pathologist who reads the slides....you never even see that individual, yet your diagnosis and subsequent treatment are dependent upon the skill of that practitioner. We are so careful to choose our oncologists and surgeons, but never think about the others. How could we? Just thinking about all the time and effort to do the research into the credentials of so many people is overwhelming. I guess what I'm trying to say is this: We do need to be informed. And we definitely need to participate in our own care decisions and be part of our own health care team. But in the end, what happens to us is up to alot more than just us.
Thanks for making us think about this important topic! Peace, Sandra

Sent by Sandra Shuler | 11:38 AM ET | 05-23-2007

I'm pulling for those guys in the basement or wherever their labs are. I wouldn't be alive now if not for the efforts of those researchers, and now I need them to pull through for me again. I have taken every FDA-approved drug available for colorectal cancer treatment and the last one is starting to show signs of losing effectiveness. RFA and the other newer treatments for tumor removal are not an option for me - my liver tumors are too large and numerous. When I sit down with my oncologist again, we'll talk about participation in clinical trials with the hope that those guys in the basement will come to the rescue again. I'm a scientist and I know how this works, but I can't say that I'm thrilled about the prospect of being a test subject in a study where my own survival is the desired outcome. The altruist in me wants to contribute to the success of another cancer treatment, but my own self interest in survival wants that magic bullet now.

Sent by Bob Maimone | 11:39 AM ET | 05-23-2007

Cancer sure is a "welcome to managed care -- the patient manages it" scenario. Fortunately, I'm relentless and good at it on my husband's behalf. I feel for those who are not, or do not have an advocate.

Speaking of: with all due respect to the various cancer societies, this blog makes me realize that what cancer families and patients need is one big, durned lobby as powerful as the AARP is for retirees. Certainly caregivers need help, and research does, too. We need a more consolidated voice at the establishment (showing my age!) to get what people need in a more unified way whether its tax breaks for those being ruined by cancer, or consolidated research dollars, or ???

Maybe we could even get that Cancer Patient highway lane you spoke of, Leroy!

Sent by Teri | 12:49 PM ET | 05-23-2007

Leroy,

I agree with Sandra about everything not being up to us. We can do only so much; our doctors can only do so much; the drugs and therapies can only do so much.

In the end we may be cancer free, we may be "maintained" with therapy, or we may die. What to do? You've said it before: live each day as fully as if it were your last. Cancer patients know that better than others.

Sent by Diana Kitch | 12:50 PM ET | 05-23-2007

Leroy,
I would like to find out from Al Cato, the gentleman who has advanced melanoma, the name of the medicine he is currently on.
A dear friend of mine is late stage melanoma and is running out of options.
Thank you for being a compassionate conduit for information like this.

Sent by Mary Sebastiani | 12:53 PM ET | 05-23-2007

Great Point Leroy. There are still so many people that do not ask questions of their doctors. So many people just go through the motions. I feel that since there is no "cure" yet it is important to be aware of what is out there. Also good to find a group that has the same cancer as you so you can see what treatments are being tried and how they are working. It helps to keep you on top of things and also makes you feel like you can have some say in this whole cancer game. I have Brain cancer. Glioblastoma. The place I go is YASG. Just putting it here since you have so many readers. And a name I would like to mention. A kid I heard about a little while ago. Akrit Jaswal. He may be 13 now? Anyway he wants to come up with the cure for cancer. Not a treatment but a cure. I was amazed by this young man. So hope is a very important thing to give us more strength to continue our fight.
Thanks Leroy
Much love
Christine

Sent by Christine VanHoose | 1:05 PM ET | 05-23-2007

Leroy,

Thanks for another thought provoking post. Reading the early replies, it seems that all the right things have been said about being one's own advocate in any type of health care.

The reality is, however, that most of us arrive in the waiting room slipping and sliding,without the slightest idea of what or how to ask. For me,just hearing that I had a single mass in the right lung, which was operable seemed both provident and a solution. Because my primary physician was part of a network, I made the decision to remain within that network. Duh! That decision meant accepting a referral to an oncologist within the system who failed to reccomend adjuvant chemo following surgery. Like you, after several months of good scans, I was re-diagnosed with mets to both lungs. Would adjuvant chemo have helped? We will never know, but the re-diagnosis was a death sentence. We simply took the comfortable route within the system we had, assumed that the docs had all the right answers, and the results were not good.

Consider also that one must suddenly develop an entire new dialog and vocabulary. Words such as metastasis, adjuvant, chemotherapy, palliative and lastly, hospice were certainly not in my daily speech pattern three years ago. When I read the reports following a scan, I'm not interested in whether my liver appears "unremarkable". It's been a fine liver up to now, having survived many serious bouts with gin and tonic. I am interested in the "benign" cyst there, what it's doing, and just how this interpreter fellow, couched in that dark room where we as patients must not go, decided it _was_ a cyst and not a tumor. ....I mean "lesion". And what do we do about it, if anything? In New-Yorkese.."Yo!...I'm dyin' here..!"

Thousands of us are locked into one-stop HMO systems by virtue of our insurance coverage. With few exceptions, we cannot escape, which is exactly what the systems want. Therefore, if we want better medical care, more choices, even a second opinion sometimes, we must go out of the system, frequently into our pockets, often painfully thin. I have read countless replies to this blog where either the patient or spouse continues to work through this maelstrom in order to maintain coverage. This is the poorest of medical care....no the poorest of human care. Few even know that a terminal cancer diagnosis may automatically qualify one for Social Security benefits.

In case no one has noticed, cancer is a growth industry. It's very profitable, not just the systems being erected in those shiny new buildings, but for the drug companies, as well. I'm imbittered when I learn that a single month's dose of Tarceva (which some HMO's are refusing to pay for, calling it experimental...and it is) may cost upwards of $4000.00. Leroy, it's not the little guy with a basement lab who is going to discover the cure. In fact, there is probably little corporate advantage to the cure, but immense profit in what I call "progress" drugs. Let's all just get over that notion. Drive along the East shore of Lake Union in Seattle. All those lovely brick buildings have appeared in the last several years for one reason. Cancer. When prime time television commercials implore us to "ask our physician about Neulasta", someone has done considerable market research...on me. No, this disease is about corner window offices with fine paneling, corporate jets, power lunches and conventions in exotic places for overpaid marketing execs. The fine physicians who bring comfort to the uncomfortable (those with dis-ease) and attempt to cure the incurable operate within another realm.

Finally, I was brought to tears by many of the replies to yesterdays post on "caregivers". In fact, it took me a day and night to ruminate. "Caregiver" is not a term I have ever used for my wife until arriving in cancer world. My gut was yesterday, and is today, "..how dare cancer cast another name on my spouse"?

Her name is Roberta and we call her Bobbie. She is the person I have loved since the day I laid eyes on her and heard her soft voice. That she came to love me, too is the highest honor I ever received. Then, she stood by my side and blessed me in marriage, and took seriously those vows, every minute of every day for the last fourteen thousand three-hundred eighty-nine days. She loved me when I was un-lovable. She tried not to cry when bearing my children that I might be spared her pain. She saw, with me, the sad eyes of our doctor when she retuned with the black and white film which was to announce passage into cancer world. She moved with me, sometimes on a whim, from California to Alaska, to New York, to Washington, loading U-Hauls like a teamster. She clenched my right hand as I drove through a terrifying snow storm crossing the Brenner Pass into Italy. She laughed at my crazy driving through Europe. She got tipsy with me at a small cafe in Paris drinking six franc wine. She sat quietly, watching as Anne hung those bags for the first chemo. She gave our three children a base of safety and sanity, to which they can always return. She is my best friend, my confidant, my lover. She would gladly don this black cloak of cancer for me in a minute. And when I die, she will be there with me, no matter what, holding my hand, as always. Sorry, "caregiver" is just not enough. We need a new vocabulary here.

Michael Lewis
Seattle

Sent by Michael Lewis | 1:50 PM ET | 05-23-2007

LeRoy
I agree with every one here. You are your own advocate. You may have the best team of doctors but you still have to make them talk to each other.
It is important to ask questions. My wife and I sit down the night before any major appointment with any of my doctors and write questions just so we don't forget anything. After every major procedure, I sit down and write what was involved with the procedure and fax it to my team. This way my team is kept informed of what my status.
One thing everyone must remember. You are the head of your team so there fore you are in charge.
Some day the basement people will come up with a cure for all cancers and that day will be one to be remembered.

Sent by Clark | 1:50 PM ET | 05-23-2007

Dear Leroy, thank you for your response to my question about the Radio Frequency Ablation and also for making it the topic of conversation on today's blog. Tomorrow afternoon my husband has an appointment with his oncologist. I am going to take your advice and speak with the doctor about the possibility of my husband having this procedure. My only hope is that he is eligible. As I have mentioned numerous times, my husband does not like to discuss his cancer, especially with me. In fact he never uses the word cancer, he refers to it as his disease. He feels that I should not mention the RFA to the doctor tomorrow, almost as if I were trying to educate the doctor and that would be an insult. He told me that the doctor probably knew about this procedure and if he were a candidate that the doctor would have told us. But, I am going to take your advice Leroy and keep " Asking, searching and questioning" I find myself puting my faith and trust in you more and more each day. Im not ready to give up and I will not allow my husband to give up either, because I know deep down in his soul he loves life, he is a survivor. I just have to get him to open up a little more with me about his feelings, this will help me to not feel so hopeless and alone. Thanks again.

Sent by sasha | 2:57 PM ET | 05-23-2007

Great point Leroy, i am always amazed that those who ask nothing about thier disease or treatment. Like cancer is the same and every chemo as well. They stick there heads in the sand partly fear of not wanting to know..Just get it over and done with.
For me I wanted to know everything and for them to do what all needed to be done . No stones unturned.
I became very pro active off the bat..cause I wanted to know everything as well as have the best care that I could get.
So when they said they were not sure convential treatment would help we opted for a trial which put me in a stable status however only partial remission. When it came back we did the same kicked it back in hopes it would remain that way.
In 97 I asked about a drug for advanced SLL stage4 and I was told hold off lets find out more info lets not jump the gun.We have this this and this lets try it. In essance my doctor wanted more info on the drug Rituxan and its side effects..More data. I always respected him for looking out for me. So I did treatment in 97 then again in 2000 and then in 2001 I recieved Rituxan and Leukine in a phase three clinical trail. It was only because my bone marrow was clean that they offered me this trial. I took it and ran with it. But it was not with a ton of thought.I also though also if this works then it will be put out there for others. And recently I read to journals and articals about it and its benifits to patients with lymphomas..So I was grateful to my oncologist/bone marrow specialists for giving me all the info and going back for a round table discussion about it.
I agree there should always be discussions.
About managing our own care..I think that is what we need to do. Yes we have hmos and managed care if this country. But we have all work together as a group of people to teach them that we want to know or it will never change.
I pretty truely believe had I not pushed the buttons for my first surgery to be done ..I wouldn't be sitting here today. I learned one thing open my mouth if things are not working. It got me where I needed to be and the job done.
For me seeing constant changes in lymphoma now has opened my eyes big time.
In 97 I had thirty infussions of chemo in a six month period. It was hard. Then in 2001 my treatment was a 4 week hitch. So to me that is process being made.
I won't say it was easlier cause it was not just when it comes down to it if they said you had to do 30 verses 4 infussions. What would your choice be? We all know it might be the last of the to.
So I pray that everyone takes the time to research and to the best possible thing for whatever their situation is.

Have a great day.

Sent by Kerry | 3:11 PM ET | 05-23-2007

To Teri who said that we need a lobby like the AARP-- I was in DC last week with the Lance Armstrong Foundation-- lobbying for increased federal support for cancer research. The LAF is trying to create the type of lobby that you mentioned...go to
livestrongarmy.com and join.

Sent by Jen | 3:12 PM ET | 05-23-2007

All the above comments about asking questions are excellent but there is one that has not been addressed. "What is the cost of the drug you are putting into my body?"

I was horrified to discover that the Avastin used for my chemo treatments for Stage 4 lung cancer was $16,950.00 per usage. For those of us living on Social Secutiry and with limited financial resources the cure seems worse than the disease. Please don't misunderstand me. I am very, very grateful to be in partial remission. However, as I joked to my doctor, "thanks for saving me from cancer so I can lie awake nights worrying about how I am going to pay the Cancer Center's bill".

Medicare only pays so much and then only for approved treatments. And AARP supplemental insurance doesn't always pick up the slack.

Maybe this is just another "down" day for me and things will look better in the morning. At least I know there WILL be another mornng. I will muddle through somehow.

Sent by Brenda Lynch | 3:40 PM ET | 05-23-2007

Dear Leroy,
A few times, since my recent diagnosis of breast cancer and treatment, I've been asked to give information to help others who have been newly diagnosed with breast cancer. I've always begun with,"You have to advocate for yourself,not be afraid to ask as many questions as you need to and trust the physicians you'll be working with." These are the things that helped me get through every day. I've also read and continue to read about any new therapies connected with breast and other cancers.
I know that there are those who would rather not know and do not ask questions but my hope for them is to find someone to advocate for them....it's so important!
To the researchers....know that what you do is important to us and gives us hope each day that this disease will be defeated. I live in HOPE and LOVE.
Blessings to everyone!!

Sent by Judith Tynan | 3:55 PM ET | 05-23-2007

i just hope the people in the basement's findings will be made more available to those of us who are unable to earn what we use to earn and who have lost their insurance than what is available now. My oncologist is totally lost. I do not qualify for federal or state assistance much less any drug program because of my earnings last year....so I am holding my breath and praying...

Sent by Kay | 4:07 PM ET | 05-23-2007

I have stage III melanoma diagnosed 7 motnhs ago and treated with surgery and radiation. Last week's scans showed no mets. I am in wait and see mode until next scans in 6 months. I would like to hear more from Al C. about his course of treatment.

Leroy, Lance and all who have shared their feelings have helped me as I learn to cope with my new life. Thank you.

Sent by Bob A. | 4:18 PM ET | 05-23-2007

Amen to that Leroy. Keep working guys there are lots of us out here who need you.

Sent by Beth Hime | 4:20 PM ET | 05-23-2007

Leroy --- Great words. I am in a hurry for the people in the basement too. For you for my dad for all the families out there dealing with this! You are such an inspiration. I can't thank you enough you have helped my father completely and me too just with your words. My dad is not much of a communicator and speaks very little about his cancer. But I think he heard everything you said! I think it was your wife (Lori) who was saying she did not want to be a part of the documentary because she was still so sad (which I thought Elizabeth Edwards I do like her but her lack of understanding of why she did not want to be a part of the documentory was baffling her and her husband are and have been in the spot light I am sure Lori has not as much and the part that counts is she is there for you and on your side daily! Who cares if she did not speak in the documentory. But I so know what she is feeling. You have helped me to come out of what I feel I was slipping into was depression. I have a supportive husband but this is not his father I feel like no one understands. I resent alot of people around because their life is the same they go on there merry way. I feel like I have cancer but I don't I have thought all those things that you said. My dad was diagnosed with Stage 4 Non-Small Cell Lung Cancer with plural effusion on July 11, 2006. Of course not curable but treatable. He was given avg. survival of 10 months to 2 years. I LOVE his oncologist he reminds me of yours at John's Hopkins so does your nurse she seems great -- they reminded me so much of my dad's team, which makes me feel even more comfortable. We have been through all kinds of chemo. Becuase of the chemo he does now have some kidney trouble they are functioning but his levels are always off and he has to have all his scans non contrast now because they fear the dye may cause kidney failure. But the kidneys other then that really are not a big issue atleast not causing my dad pain or anything. From 1st diagnosis The cancer has since spread to the bone and just recently the brain. He was on steroids and had radiation and seems to be doing good for now. He feels awesome and has done more these past 4 weeks then in months and it is because of you! We watched Living with Cancer on Discovery channel together. Which I gave him such credit I am sure it must have been hard! I am his main care giver he lives alone and although I have 2 brothers they don't help at all. Well let me say 1 brother did take him for a bone scan and 2 radiation treatments and the other has taken him 1 time to the oncoligist for some IV fluids and dropped him him off for a blood transfussion. I have done EVERYTHING else, while working, juggling a 4 and 8 year old and a house of my own with errands, laundry etc. Thank god I have such an understanding and supportive husband. And you know what I mean by everything treatments, insurance, constant research, dealing with doctors, dealing with his work, dealing with doctors bills and insurance. Looking back we have had some really tough times but also some wonderful memories that have gotten me through the tough days! I am a daddy's girl and there isn't anything I wouldn't do for him. He deserves the best care and someone to be by his side through this it is the only thing I can do for him because I can't do anything else to get rid of this disease. I have even pulled out the last of his hair when he was losing it because he could not reach it. I have gotten so desparate and have thought of finding someone like Dr. Kevorcian (sp?) so he can die and still have dignity. It takes so much away from you! Anyways after watching your show the next day he got up and has done yard work, inside the house projects, things for the future just like you said. It is like he is a new man because of your inspiration. I too have felt a cloud lifted because of you and your wife. Don't get me wrong I am sad on a daily basis and hate that there is nothing I can do but with him and around him we don't think about it lately we laugh and have fun. And we have done that through out but much more lately! Well until yesterday when we found out that since he now has the brain mets he is not eligible for this study we were talking about because of vascular bleeding etc. We are now trying Tarceva -- but are starting to run out of options. We have to try something he is not ready to give up but because in 2 months the lung tumor has grown from 2x2 to 6x3 back where it was last June when it was 1st found we have to stop it atleast hold it at bay for awhile! The brain, although tumors are still there, we are told they are stable and that is what we want for now. I was reading more on the Radio Frequency Ablation and altough he may not be eligible for it I want to ask anyways. I am getting desperate! Can you email me some more information on that or lead me in the right direction. I did do a search and found interesting info. but can't seem to find if this is something he can even be eligible for or if it is done in our area. Maybe I am not looking hard enough or I am missing something! His doctor is very cautious and I am not sure since it has never been brought up if this is something we would even recommend. His doctor has always been on the ball and has a plan but yesterday I walked out feeling like the plan is coming to an end. Anything or way you can direct me would be so appreciated. I will continue to read your blog for strength and inspiration. And I will continue to think about you and have you in my prayers and heart. You have gotten through to my dad in away that no one else has sparked and there is no payback for that. Thanks again for sharing your story. And let's all keep pulling for the people in the basement to step it up! Sincerely, Cori Swanson

Sent by Cori Swanson | 5:12 PM ET | 05-23-2007

Never ever give in.

Sent by Crawford | 5:38 PM ET | 05-23-2007

This is my first post to the Blog. I am a 9 year survivor of Breast Cancer, last May my breast cancer spread to my bones, at this point I am doing well on an estrogen inhibitor, shutting down all estrogen in my body. I just wish there was a way to grade doctors. We really just go by blind faith or maybe a recommendation from someone we know. We really put a lot of trust (our life) into a total stranger hands. How can we compare doctors? Especially when you are dealing with a disease you know little about. It really comes down to their personality or your perception of what you think they know.

Sent by Linda | 10:29 PM ET | 05-23-2007

For the (my) ovarian cancer community, advocacy for awareness, detection and research are particularly high hurdles. Most internists and gyns don't discuss this as a possibility with patients who present mild symptoms. Most medical insurance carriers will not pay for the combination of blood work and ultrasound exams unless there is a family history, even though family history accounts for a relatively small percentage of overall cases. The rationale given is that these tests are too are inconclusive. Also, the actuarial calculations claim that it is cheaper to treat only those patients who present late stage symptoms, rather than screening more women earlier. I'm guessing that those calculations don't factor in the human costs to the 70+ percent of late stage cases. Not coincidentally, without early detection, there has been no increase in the overall OC survival rates in the past 10 or more years.

By comparison, earlier in my life I've had two breast surgeries, first for a small lump, and, ten years later for something detected on a mammogram. Each turned out to be neither a tumor, nor malignant. But, there was no question about doing each surgery, or the insurance coverage for those procedures.

In the research department, progress in the treatment of ovarian cancers tends to come primarily from research for other cancers. Later, those drugs are supplied for clinical trials for ovarian cancer. There is little federal funding available for direct application (especially that detection part). Last year, I was heartened to hear of the results of a small research project at a major university in this country. It was only a petri dish experiment, but the toxic agent (ginger!) applied directly to OC cells, wiped them out completely. I'm sure that it will be quite some time in those same basements until this research bears fruit. Like you, Leroy, I am counting on them for the treatment breakthroughs that we need, and hoping for sooner rather than later.

Sent by Sheara | 10:44 PM ET | 05-23-2007

Absolutely, I think about "the people in the basement" often and feel so grateful for the work they do! Without Herceptin, I would have much less hope right now. It's funny -- a few months back, when chemo had zapped my white blood count (or was it the red blood count?), my friendly HMO sent me home with a bag full of needles and instructions to inject myself daily with something called Neupogen to bring the count back up. This happened several weeks in a row, and I was a real baby about it. So I called an old friend who is a nurse practitioner, whined a lot, and she took pity on me and came over to give me the shots. Eventually she taught me how to do those injections myself, calmly (well, more or less...). So she and I were talking and I asked about her son, whom I had known as a freckle-faced rascal a few years ago, my own son's best friend back in grammar school. And guess what he is doing now? Getting a PhD in Chemistry. And working on new cancer drugs!! That just thrilled me. Now, whenever I think about cancer research, I picture Dustin's freckled face...and smile.

Sent by Doris | 11:11 PM ET | 05-23-2007

I saw the Living with Cancer program and have really enjoyed your blog. I am a 3-time young adult cancer survivor (I had a rare type of spinal cord cancer). I have had 3 years of no evidence of disease (my longest yet) and have some tests coming up because of a bump in my back. So now, more than usual, has thrown me back into thinking of cancer and it's effects on my life. It's always there regardless and I have made a point to do lots of advocacy and helping others.

Thanks again for sharing your journey.

Rachel Baumgartner

Sent by Rachel Baumgartner | 1:23 AM ET | 05-24-2007

Bless the "Basement People"!!

Sent by Sandi Li | 7:04 AM ET | 05-24-2007

hi leroy and everyone,
to vickie---sorry i didn't have a chance to respond earlier but i wanted to tell you that i love the melissa etheridge song "i run for life". its on my ipod and i listen to it every day on my run and especially when the run gets harder. i also love another song that you all may know about ...its called "live strong"(the lance armstrong song) by wideawake. its great and i blast that everyday as well. music helps me when i'm at my worst. today may be one of those days. i went to my doctor today and received my herceptin infusion which by the way i owe to one of those "basement guys" . i have or maybe i should say "had" a type of breast cancer that overexpressed a protein called her 2 neu. it used to be considered a particularly aggressive nasty form of breast cancer but with the invention of herceptin in the last few years, many lives have been saved...including mine. now its not considered a "negative" to have this form of cancer but a "positive"; which believe me i am so grateful for. i started it during the last rounds of my chemo last summer and i only have 3 more left to receive. they give it to women with early stage disease for 1 year. they admit not really knowing how long to leave us on it since it is so new which makes me very nervous at times. when i'm done with it, i suppose it will be very bittersweet. it has become sort of "old hat" to show up in the chemo room every 2-3 weeks for a year now ...although i never really got used to it just those around me have. no one really knows what its like to have to go there and deal with all that but a cancer patient. i think everyone expects me to "move on" since i am ,for the most part, done with treatment--surgeries and chemo....but when do you ever really move on??? its been hard making the transition to a normal person again and its made harder when those around you just "expect " you to. for one , the fear is almost paralyzing now at times waiting to see if it will return. and again,i worry more for my husband who deserves to have his wife and for my 2 little boys who definitely deserve to have their mommmy. i also am made very aware when i look in the mirror everyday to see 4 scars and short hair where long curls once were. so i guess my question is....does it ever really end??? when do you move on?? can you move on??
to Tess in KY ....i will say although i don't really know the answers to the above questions, i will say i was in your shoes 1 year ago and the difference a year makes is amazing. i still have "my moments' but they are fewer and further between. i think melissa etheridge ( i love her) once said in an interview " its never as bad as the day they tell you". that is truly the worst i think. it will ease and before you know it , you will be the one typing this message to someone else. i guess time is the answer..it heals all and i just hope we all receive the TIME it takes to do just that....heal
have a blessed day, Kelly

Sent by Kelly Reichart | 7:13 AM ET | 05-24-2007

Seventeen years ago, when my sister's breast cancer was discovered, it appeared that the course was clear: surgery, chemo...but wait! The oncologists disagreed about methotrexate vs. kinder chemicals. This led to a third opinion, then a fourth...and in the end, the decision was...no chemo at all!
This is how we learned that even the most seemingly straightforward case can be a source of disagreement among the experts. A respectful dialogue about what the pathology of the tumor really was, carried out by four experts in three states on a conference call looking at their respective slices of my sister's breast, resulted in calling off any further treatment. The phone call came to her nine hours before she was to get the first dose of chemotherapy. That was eighteen years ago. She's fine.
My sister benefitted from the happy accident of experts disagreeing. I wonder how many people would benefit from seeking out disagreement. Ask: what factors did you consider that led you to this conclusion? Are there other reasonable ways to look at this? What would change if only one of your assumptions or beliefs changed? Tell me about a colleague of yours who treates cancer like mine in a different way. What is the difference and why is it different? If a spaceship took you to Mars tomorrow, would the person who took your place follow the same course that you are recommending to me?
I send my appreciation and deep respect to Leroy and to all who contribute to this blog.

Sent by Wendy Hovey | 8:02 AM ET | 05-24-2007

No, I definitely do NOT agree that what happens to us is up to us. Way too many forces & factors impacting a human being. Humans try and try and try and stuff happens anyway. Good and bad.

But, yes, here is a big toast to those folks in the basement. If they weren't there, my own particular cancer experience would be a million - would it hyperbole to state - a zillion times more unpleasant. If it were not for those scientists, researchers, doctors, and pharmaceutical companies there would not be a notion of a future for me, and I certainly would have been far more impacted daily, unlike so many of the people here are going through terrible heck. I want so badly the same chance for other cancer patients - if it can be done for my blood cancer, can't it be just around the corner for others? And I know this treatment/drug is only about 5 years old, and things could still go horribly wrong at any time, but for the moment, the efforts of the aforementioned scientists have provided me the luxury of the same unknown future that others have.

Sent by Pika | 8:41 AM ET | 05-24-2007

For Bob A.
I visited an old Marine buddy this week who 7 years ago was DX'd with melanoma and given 6 months. It was the kind you coudn't see as a mole. But you could watch a tumor grow from morning to night. He's now remodeling the house and fishing. And we spent a few days retelling the story's we've told each other a thousand times (and the lies)and laughing ourselves silly.
During his treatments I visited him about every 6 months. Requires a flight. We would go fishing and visit a local bakery for coffee and pastry.

Now he holds my hand after my pancreatic cancer DX. I intend to beat it. So hope is almost always there. Try staying upbeat and fighting. Maybe we will both triumph.

Sent by Lou Mayers | 10:46 AM ET | 05-24-2007

It is ALWAys too early to give up!!

Sent by Cathy W | 11:24 AM ET | 05-24-2007

Leroy,
Yes you have brought up a great topic that we are our best advocates on our care. There is a flaw though, some of us who battle this disease work with limited resources. We are not well known or have lots of money that can have care at big Cancer hospitals where there are doctors trying out different approaches. I live in a small town and my care is done by a HMO that is an hour away. I have switched oncologist because the first one said to not to treat and to focus on the quality of life that I had left. The natural instinct was to fight and I scoured the internet and everywhere I could to come up possiable solutions. I then found a dr. in my HMO that was willing to try out the ideas I had found. I have lived a year past the first expiration date I was given, but alas I long for treatment at large medical center so more options would be available. Unfortunately the have nots in this country don't have that luxury. The poorer members of the cancer club struggle to find help.. help that we can afford.

Sent by Miriam | 11:41 AM ET | 05-24-2007

Michael Lewis--I am speechless (typeless, I guess is the right thing to say)! I just cried when I read your post about your wife Bobbie and the beautiful things you wrote. Absolutely beautiful!

And to Kelly; I can relate so well to you. Thank you for responding. I think I'm just so new to this and I'm just now trying to cope with it. I had to fill out some FMLA papers for my work the other day and had faxed them to my doctor. One of the questions was in regards to how long treatment would last and he scribbled out what my HR director wrote and put in BIG BOLD letters: LIFELONG. That hit me and hit me hard. Sure, I knew that I had cancer, but it never logically hit me until I saw those words that this will be lifelong. And in the days since my post about being sad and alone, I've realized alot of things. For one thing, I'm not alone! I thank God that I made the decision to watch the documentary (my husband thought it would be too depressing, but has since watched it as well); I thank God that Leroy has this blog and I found it and all of you. I needed a safe place to put my thoughts down, but also to be heard. I've realized how lucky I am to have such a wonderful husband, who I know is scared, but puts on a brave face for me everyday. I'm lucky to have my parents and siblings and friends that are truly concerned about my well-being. But I think more than anything, I've learned to appreciate my life and not take it for granted. And I hope it's made me a better person.

Sent by Tess from KY | 3:11 PM ET | 05-24-2007

I am terribly bothered by the pharmaceutical industry's and the insurance company's negative roles in our disease and illnesses. I have friends who worked very hard all their lives and are now "going broke," having used every penny of their savings to pay for medical care. And these are friends who are insured !!! I know as well, two families who also worked long and hard in their careers who are now declaring bankruptcy due to huge medical bills: they also had health insurance. And yesterday my oncologist told me that though a certain very new treatment sounded as if it might be good for me and women like me with metastatic breast cancer, insurance would never cover it. I understand that people have gone without treatments that might benefit them enormously because their insurance would not cover it.

We are "the richest country" in the world (at least in dollars,) but we do not offer our own citizens good and affordable health care.

Nancy

Sent by Nancy | 6:12 PM ET | 05-24-2007

Leroy,

It's funny that you brought this up...I'm actually in Nashville, TN. in a Phase I Clinical Trial being conducted at Vanderbilt University. Originally diagnosed with Ewing's Sarcoma in March of 2006 at the age of 24, I recently found out my cancer has come back. Knowing how grim my chances were to begin with, and how they grew even worse with a recurrence, I was devastated. But new hope arrived. Apparently, someone involved in this study with the same disease not only responded well to the treatment but actually went into remission. This is apparently is unheard of in a Phase I Trial.

I used to hear Lance Armstrong talk about how important and necessary it is to get involved in clinical trials. He said to brush off the stigma commonly associated with them. Initially, I dismissed this because of the rarity of my particular disease. I thought, "not for me." I was surprised, so surprised, to find out about this promising drug. I often thought that much of the information that applied to cancer patients didn't apply to me and my rare companion. But I'm so relieved to know that I was wrong.

I've only received one treatment so far, with another one scheduled a couple weeks from now. I have no idea if my tumors will respond, but I'm hoping they will. I'm hoping for me and for everyone who will unfortunately encounter this disease in the future. More than anything else, the fact that it isn't chemo, puts a smile on my face.

Thank you Leroy and everyone else who keeps this blog so comfortable, so inviting, and so personally safe.

Sent by Bobby Silberman from CT | 7:17 PM ET | 05-24-2007

Leroy,
Thanks for the encouraging post. I was on the phone most of the day trying to find a phase I trial. None of the treatments are working and my mets are spreading. I'm trying not to panic. I'm just hoping one of the new treatments might work for me and hoping that I don't pick the wrong one and die from the side effects or waste too much time while my cancer continues to grow.

Sent by Jill | 8:02 PM ET | 05-24-2007

The guys in the basement need money to develop the options that give cancer patients hope. The tobacco industry is paying individual states over $250 Billion dollars over 25 years as part of the tobacco settlement case of 1998. On average, about 2-3% of that money goes to smoking ceasation programs. Nothing else goes to fighting tobacco related illnesses - that means it is not being used for cancer research or helping those in need pay for cancer treatments, etc. Most of the money goes to unrealted state programs and balanced budget initiatives. Amazing when you think that tobacco use is associated with about one-third of all cancer cases. Imagine of only half of the settlement money was earmarked for cancer research. I'm hoping one of the presidential candidates picks up on this "no brainer" opportunity - to really cast a war on cancer, and pressure states to fund cancer research with money that is already there, from a source that deserves to pay for it. We can all use a fatter and faster pipeline of new treatments, and unfortuantely it is money that is holding back the advancements we need to survive longer.

Sent by dennis22 | 12:02 AM ET | 05-25-2007

This installment from you is so right-on. I did not see it that way
during my initial three years of chemo, then bone marrow transplant and
radiation for my non-Hodgkins lymphoma, thinking each treatment would produce a "cure."
My eternal hopefulness took a
dive when, 9 months after the arduous marrow transplant, the cancer was back. Also, the radiation oncologist had once said so confidently,
so casually---and so wrongly-- "Well, if your cancer comes back, there's nothing more you can do."

Although I did not know it then, what I had done was to buy time. I was the first patient in Southwest Colorado to get to
try the monoclonal antibody Rituxan, just cleared for use for lymphoma.
After many, many treatments it worked! My first all-clear CT scan was
in Sept. of '98.

With a few not too serious sequelae from the Rituxan, I've been enjoying good health since then! Of course, I definitely do not know how much time I have left, but 9 1/2 years is pretty damned great.
(There still are those nerve wracking days preceding periodic scans and the anxiety about any abdominal twinges)

So I shall hope for the same great results for you and for so many others. It's a
brave battle you're waging. Caye Geer, Durango Colorado

Sent by Caye Geer | 9:45 PM ET | 05-25-2007

One aspect about 'fighting cancer' that never seems to get mentioned is the constant fight to get the proper treatment. I have had prostate cancer for two years, and I must spend much of my time and energy looking over the shoulder of my doctors, making sure that they are up on the latest developments, and when I see something promising, I must debate the merits of the new treatment with them.

I am tired of hearing the term "Standard of Care". I have a very rare form of cancer, and there is no "Standard of Care". My oncologists want to force me into the "Standard of Care" for the typical kind of prostate cancer, all the while admitting that it won't work. Anything we do will necessarily be outside the "Standard of Care", and so they are unwilling to consider it. It is easy for them to be unwilling to think outside the box, but my life is at stake.

This constant struggle is almost as debilitating as the disease itself. By the way, I am a doctor myself and have spent years in cancer research, so my approach is not an uninformed one.

Sent by Bill | 10:00 AM ET | 05-26-2007