When Do We Get to the Easy Questions?

 
“I had new scans on Tuesday. I guess you'd have to say that the results are mixed. All of the tumors stayed the same -- except for one. One of the tumors in my lungs grew substantially.”
 
 

I'm sitting here trying to make sense of all this. I had new scans on Tuesday. I guess you'd have to say that the results are mixed. All of the tumors stayed the same: no growth — except for one. One of the tumors in my lungs grew substantially. Not the news I was hoping for, obviously. But it's a little strange for one tumor to grow while the others didn't. Even my doctors said they hadn't expected that. So what to do?

First things first: We've decided to go ahead with radiation to kill the tumor on my spine. Even though it was unchanged, I think we all feel that it's better just to kill it and be done with it. The other decisions aren't so easy. The normal response to this kind of development would be to change chemo regimens. Switch to a different set of drugs. Sounds easy, but here's the problem: I can switch to an alternate drug cocktail, but no one knows whether it will be effective. It could shrink the tumors, hold them in place or do nothing and allow them to grow unchecked. You don't know until you try it.

I like to gamble, but those odds don't seem so great to me. The studies show that if you do switch drugs, the effectiveness is greatly reduced. If that second set of chemicals doesn't work, you switch to yet another one, but each time, the studies seem to show that the effectiveness lessens — substantially.

So I'm sitting here knowing that the chemo I've been on has apparently worked on five of the tumors. But since one tumor broke through, should I give it up entirely and make the switch? I've asked my doctors about another way to approach it: Attack that one tumor with radiation. Kill it, if possible, then go on with the chemo that seems to work on the other tumors for as long as it continues to work. This is not the normal approach, and the doctors are talking it over. It has the advantage of killing that one tumor, and I hope thereby sending a message to the others. If you grow, you die.

None of us are prepared to make this kind of decision. Even the doctors don't know what will happen in each case. You sort of have to guess, take your best shot. The problem is if you guess wrong, it can send you down a spiral of worsening results.

I had tried to prepare myself for the real possibility of bad news before I had the scans, but that never really works. You still hope for good news. It's this in-between news — sort of bad, but could be worse — that is so difficult. When do we get to the easy questions?

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Thank you for continuing to post even on days that bring not-100 percent good news. I like the fact that you are taking an active part with your treatment by suggesting to your doctors a possible route of treatment. As the son of someone who is living with stage IV breast cancer metastasis I pray for everyone to be well for many more holiday seasons to come.

Sent by John Pappas | 10:04 AM ET | 12-14-2006

God, it's like the pathetic fallacy, isn't it? It's so natural to ascribe sentient, human concepts to these awful tumors. We do the same in my house, live the "war on cancer," send messages to tumors and their posse. And then sometimes the narrative goes nihilist on you. One minute you're living Ivanhoe, the next, The Stranger. I do hope your doctors come up quickly with an approach that is the exact best, next thing. Kick the big boy tumor to the curb with special chemo/radiation attention OR stay the course. In any case, I hope they help you find a direction — and the peace that comes with a decision — so that you can more fully enjoy Christmas. Easy questions are for sissies, and people with cancer don't get to be that, do they? Good luck, Leroy.

Sent by Teri | 10:32 AM ET | 12-14-2006

Oh Leroy, NOT the kind of news that any of us who follow your blog wanted to hear from you. Cancer is the unwanted gift that just keeps on giving, isn't it? If you had to get that news, it's rotten that it had to come just before Christmas. Talk about a buzz kill!

I wish you the best possible outcome of this, and that in spite of it, you have a memorable and happy Christmas. Perhaps the rads will really be the way to remove the tumors and allow you to continue on the chemotherapy that's been otherwise so effective for you. Let's be open to the possibility that there is another solution that has just not been thought of yet. Consider yourself hugged.

Sent by Nancy K. Clark | 10:34 AM ET | 12-14-2006

I am so saddened by your latest news Leroy. We don't deserve to hear results and choices to make like this. I can only suggest prayer and research to aid you in making this latest choice as where to go with your cocktails. I wish I had something bright and very intelligent to say but my heart drops to the floor everytime I am given more news. This is an amazing roller coaster ride and I guess we must keep plugging away and follow our heart.

Sent by Marianne Dalton | 10:40 AM ET | 12-14-2006

As I read your entry for today, I thought the title should be "No Take backs." Like children who are forced to make a choice and after making it, find the other choice was the seemingly better one. "No Take backs" applies to so much we do in life. In your case and with others with cancer, the choices and results are literally life and death.

As you've had to do since your first contact with cancer, just try to take in all the facts, reason it out as best you can with those you trust, then go head up and resolutely into the direction you choose. My thoughts and prayers are with you and others as you make and live with these decisions.

Sent by Leslie | 10:43 AM ET | 12-14-2006

That's a tough one. Good luck, it sounds like you're on the right path and feel in your gut what the right thing to do is. If it is and you're well on your way to convincing your doctors, peace be with you.

Sent by Nichole | 11:00 AM ET | 12-14-2006

A while back you spoke of the rollercoaster ride that is cancer. I agree that it just gets more and more bizarre. Your tumor response makes no sense. My tumor response makes no sense. We, my doctor and I, have done nothing since the end of April. No more surgery, no chemo, no radiation. I had a tumor pop up on my abdominal wall, where no one expected it in the first place, in October. I went back for a CT scan this last Monday, and the tumor has dissipated. It has us all scratching our heads. Not that Im not thrilled, but very confused, as is my doctor. What to do next is more of what we have been doing — nothing. Which is fine, but how about the rest of my life? Do I go for my annual gyno exam or is that still sort of moot? Do I get a new car or one for my husband?

Sent by Stephanie Dornbrook | 11:11 AM ET | 12-14-2006

So many people are going to be devastated by your news today. We have come to know you and feel in some way we are in this fight with you. Contrary news is taken personally. Know that you are in my thoughts and my prayers.

Sent by Patricia | 11:19 AM ET | 12-14-2006

Good morning Mr. Sievers,

My sister, Patti, just called me in tears after having read your post this morning. She has breast cancer and had her first chemo treatment this past Friday. She reads your blog every day, having discovered it through her own set of circumstances. She has a remarkable ability to empathize — and I know that she feels your pain. I'm not sure she will write herself, but I know that she greatly admires your courage and through your example, she is able to face her own challenge a bit more easily. So thank you, dear sir, for opening your life to a world of strangers. We both wish you good things and continued recovery.

Sent by Penny Kellar | 11:21 AM ET | 12-14-2006

Cancer claimed my daughter?s 19 year old boyfriend the Saturday after thanksgiving. He had been diagnosed only six months ago. Doctors said his body seemed to not be able to fight the cancer at all. Oral (tongue) cancer in someone who never used tobacco of any sort. No piercing, no reasonable conclusion can I find. I pray that everyone at this blog will enjoy this holiday season with those you love. My family and I will miss Ben very much.

Sent by Leah Wellman | 11:25 AM ET | 12-14-2006

I've continued to follow your words every day, even as my journey is in the 'we hope we cured it' stage. My heart sank at your mixed news this morning, though I do love the idea of sending a threat to the other tumors! Thinking good thoughts for you as you make your way through the next decisions, and hoping the holiday can still hold some joy and peace.

Sent by Leigh Hough | 11:31 AM ET | 12-14-2006

It's easy for me, sitting in my office all healthy and normal, to tell you to look on the bright side of things. Sometimes it feels as if there is no bright side, no matter how you turn it or hold it up to the light. Good news that the other tumors HAVE responded and that your special cocktails and the radiation is worth the side effects.

Merry Christmas and happy holidays to you at this time of the year when all the bright lights sometimes cast a glare.

Sent by Choux Smith | 11:34 AM ET | 12-14-2006

I'm grateful for you blogging about the confusing parts. The battle is hard enough when the doctors all agree about what the next best thing to do is. When they're unsure too, and the consequences of whatever decision you reach are so severe, that makes things really scary.

The way youve written it, I kind of like the blast away the big tumors with radiation and continue on with the same chemo option. But let's face it, sometimes all the choices just suck (to use the language of my students) and that is nowhere more true than in the cancer wars! I wish you peace with whatever decision you come to.

Sent by N.R. | 11:36 AM ET | 12-14-2006

Leroy,

It seems to me that if none of tumors shrank and one even grew that the drugs you were on didn't work, don't you think? I just hate all the guesswork involved in treating cancer. Do you have faith in your doctors? I ask because I don't have much faith in mine. I wish you all the best in your deliberations, you are a smart man, you'll know what to do.

Sent by Ruth White | 11:50 AM ET | 12-14-2006

Dear Leroy,

You might want to listen to Eliza Gilkyson's wonderful song, Calm Before the Storm, about now as you ponder your options. The line "your vessels made for times like these," has become a mantra for me at crossroads. I heard her sing it live and found it profoundly heartening: I offer it to you in that spirit!

Sent by Sarah | 12:27 PM ET | 12-14-2006

Leroy,

You have such amazing presence of mind to ask about radiation for the growing tumor. Thank you for your reminder for each of us to keep thinking outside of the box. To add to your observation about the relative effectiveness of the progressive chemo regimens, I think there is one hopeful note. It seems as though new chemo regimens tend to gain their earliest approvals for recurrent and/or refractory (unresponsive) tumors and become elevated to front-line treatments as greater use numerically demonstrates additional benefits. Hopefully, when it comes time for you, or any of us, to switch, we will be treated with a combination that has the potential for greater effectiveness than the current front-line. Ill find out the results of my latest CT scan next Tuesday and I've been (no doubt) foolishly priding myself for not worrying for the past few days, trying to live some of the normalcy you've written about in earlier posts. I wish you the warmest of Christmas and New Years holidays, with your nearest and dearest family and friends.

Sent by Sheara | 12:29 PM ET | 12-14-2006

One of the women in my support group has been fighting lung cancer since 1997. Her mantra is "Information. Its not good news or bad news — it's information to make decisions." I try to remember this as I go through annual tests after completing cancer treatment two years ago. And remember the old adage, "no one gets out of here alive." Cancer may be what kills you, but no one really knows when. At least I've not found an expiration date tattooed on me or my friends. Take care and keep telling your story as long as you want to and can.

Sent by Helen | 12:34 PM ET | 12-14-2006

I was on Evastin for a while and things were stable until I took a vacation, stopped chemo for over a month and find myself with a new growth. I was told the Evastin did all it could and no more. Ten sessions of radiation later, the new tumor was 1/3 the size. Unfortunately, during radiation we stopped chemo(CMP11) again and (my guess) that gave chance to two more tumors to grow in different parts of body and the CA number from 5 jumped to 15.

I am now back on chemo, once every two wks instead of every 3 wks, and a new chemo added similar to Erbitux. The side effects are not pleasant. The alternative is much less pleasant.

Somehow the good Lord will help me ?- how? I don't know. Take care my friend and the Lord be with you.

Sent by Angelo Balistreri | 12:17 PM ET | 12-15-2006

When my husband had cancer a doctor told me they had learned that with certain types of cancer one tumor will grow and send signals to the rest of the cells to not grow tumors. This happens until the one tumor is large and then signals to allow other tumors to grow. He said you must look at cancer cells like they are autonomous beings having all that is needed to have a life of their own, then understand their behavior and interaction between themselves and other cells in the host.

It helped me understand the value of treating the whole system.

He also said even with Avastin that cuts off the blood supply a complementary therapy is warranted because when the cancer loses its blood supply it grows little fingers looking for replacements. How do you outsmart this thing?

It also showed me that understanding cancer can sometimes feel like the doctors are just beginning to tackle it.

More research is needed now.

Sent by Irene | 4:28 PM ET | 12-15-2006

Leroy, My heart goes out to you. I have advanced breast cancer and I have also been through some weird episodes. The ups and downs of it all, never knowing what to expect. Right now, I have a tumor on my spine. I am taking oral chemo pills. I have exhausted every other type of chemo and hormone blocker pills. Everything worked for a while, but eventually stopped working. I get my tumor markers checked every time I go to the doctors. For a while they went down dramatically. Now, all of a sudden, they have stopped declining. I don't know what to think.

People keep asking me if I'm still on chemo, like it's magically going to make the tumor go away and I'll never have to worry about it again.

I look very healthy and have a great career. Funny how looks can be so deceiving. If only people know what was going on in my head (and body!!)

Sent by Lorraine | 4:44 PM ET | 12-15-2006

Leroy, I was really knocked for a loop with your blog today. I have had seven chemo treatments and am on a six-week break now. Will go for my pet and CT scans in late January. I never dreamed that the chemo could be working on some tumors and not the others. I have tumors in the lungs and a tumor in the liver. When they first started me on chemo I never thought it would be as bad as it is. So I am really giving a lot of thought now to what I am going to do if I am not in remission. I really don't see myself being as strong as you have been for a year now. I know you have a tough decision to make and I wish you the best of luck. I hope I don't have to make that decision for myself.

Sent by Dave Snipes | 5:08 PM ET | 12-15-2006

I just found your Web site this weekend and have spent every spare minute reading it. I can't believe someone is able to put into words exactly how I have felt since being diagnosed with stage IV colon cancer in April 2006. You make me feel strong. I wish you the best. I have just started another round of chemo after a failed resection. I no longer feel alone. Thank you for sharing your life with me. I look forward to more free time so I can read every word you have written.

Sent by Debbie | 11:30 AM ET | 12-18-2006



   
   
   
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Leroy Sievers

Leroy Sievers

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Leroy Sievers in the Ted Koppel Documentary

A Ted Koppel documentary focuses on his friend Leroy Sievers' "My Cancer" blog and the response it evokes.

 
 
 

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A journalist for more than 25 years, Leroy Sievers worked at CBS News, the Discovery Channel, and ABC News, where he was the executive producer of Nightline. He wrote this blog daily until his death in August.

 
 

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