No New Side Effects Yet

 
“One of the strange things about cancer is that it sort of makes you distrust your own body. After all, it, or at least part of it, is trying to kill me.”
 
 

I started a new drug yesterday: Avastin. This is the one I wrote about a few weeks ago — the one that has the potential for very serious side effects, such as bleeding in the brain. But I had a brain scan a few weeks ago and it was clear, so after a long talk with my oncologists, we decided to go forward. I am writing this having just gotten back from the hospital. I'm sort of listening to my body to try to see if there are any new problems.

There is one side effect that caught my eye. I was kidding about it with my doctor, and he said he knew that I was going to write about it. Gastrointestinal perforation. That's a scary term. It sort of brings up images of your stomach exploding or something like that. In truth, as my oncologists calmed me down, they explained that developing a hole in the gut is a very rare side effect of the drug that can happen if you just had surgery in the last month or two. Not something for me to worry about, although I keep looking down at my abdomen, expecting the worst.

The doctors are pretty excited about Avastin. It has shown some real promise in actually shrinking tumors, not just holding them in place. That would be terrific. Of course, this is also one of those times when you realize, as a patient, that your frame of reference is very different from the medical community. In tests, Avastin has, in some cases, led to about an extra four months of survival. That's great. Of course, as the patient, what would be really great would be four years. Again, just looking at the same thing from different sides.

One of the strange things about cancer is that it sort of makes you distrust your own body. After all, it, or at least part of it, is trying to kill me. Most of my body seems neutral; my lungs however, seem to have an attitude. You look at your body, and know that this war is going on, but it's all hidden from view. But I have put my body through some punishment. Maybe I should be more forgiving.

Bottom line, no new side effects yet and a new drug that may help — I think this counts as a pretty good day after all.

 

Comments (Send a comment)

Leroy,

I think Avastin is pretty much saving my life. If they told me I would have to stop all my cheo drugs, but I could keep one. I would check out everything Avastin.

Sent by Cherie Brown | 12:42 PM ET | 08-29-2006

Mr. Seivers, Have you heard about IAA therapy. Interveneous Ascorbic Acid therapy. Essentially it is liquid Vitamin C with hydrogen peroxide about three times per week. No side effects I've yet heard about. Excellent results in many, many cases.

Sent by Jack | 12:44 PM ET | 08-29-2006

Mood = cautious optimism? Sounds like a good thing, Leroy. I know I have having an incredibly hard time getting past this "betrayal by my body" mindset. Now just why should I feed this traitorous carcass nutritious food, exercise and get enough rest? But of course I feel better when I do... Hang in there, best wishes!

Sent by Val | 2:14 PM ET | 08-29-2006

I've been taking Avastin for about eight months now (except for a little time when my kidney function got worse). Every two weeks they fill me up.

I'm getting better at it as time goes by — the side effects are there but my mind and body are struggling to deal with them. Try to chart your odd feelings — I've found them to be almost always cyclical — it helps to know what to expect and how long it will last.

Bottom line is it definitely is working for me — scans show no worsening and some improvement.

Good luck. I hope it is as good for you as its been for me.

Sent by Pete Tarantola | 2:17 PM ET | 08-29-2006

Leroy,

Sending you good thoughts and especially praying that Avastin will provide you with new hope and be successful in giving you many happy days ahead!

I once heard and often repeat the phrase, "If I had known I would live this long, I would have taken much better care of my body." I look back over my youthful adolescence and wonder how this miracle of a body survived all I threw at it.

Best wishes always.

Sent by Ed Brown | 2:20 PM ET | 08-29-2006

Hey, Leroy,

I started a two-week cycle of GM-CSF shots yesterday for melanoma & on Sat. will start a five-day regimen of Temodar pills (chemo). When I started working with the doctors two and a half years ago to combat this disease, I had a hard time calling myself a survivor. No one in my family has had cancer, but we all spent hours in the sun without hats, long sleeves, out in the fresh air you can enjoy when you camp with a tent, eat all meals outside, etc. So, I have melanoma and not the "simpler" forms of skin cancer. So, I've started another round of treatment because the others didn't hold back the onslaught. I asked the doctor exactly where the enlarged lymph nodes are in my chest and neck, in case I can catch them first (as I was able to do three times when they popped up in my neck). Some days it feels like a weird land to live in, this internal cancer fight, but mostly it's just me and my extremely supportive loved ones. God bless you for your words and in your fight with this disease!

Sent by Eunice | 2:22 PM ET | 08-29-2006

Avastin is amazing stuff. I'm just getting ready to start my fifth cycle with it. When I was diagnosed with the liver mets, I was experiencing chest pain because my liver was swollen to twice its normal size and the rectal tumor I have was making life difficult as well. I noticed immediate relief after the very first treatment. I was a little worried about the gastrointestinal perforation also, but it hasn't been an issue. As for other side effects, you might notice blood in the mucous from your nose after a few treatments - bloody noses are noted as a side effect.

The development of Avastin and other therapeutic antibody drugs demonstrates the progress that has been made in recent years. I hope that it works for you.

Sent by Bob | 2:24 PM ET | 08-29-2006

I'm two weeks into my second cycle of chemo — my first with Avastin (along with Taxol and Carbo) — this for stage IV lung cancer. I'm also having no side effects, but I'm also wondering how an extra two and a half months of life elicits such excitement from the oncologists. I'd like to swap places with them and see how they feel about these statistics.

Sent by David Schurr | 2:27 PM ET | 08-29-2006

It's certainly a good day when there is another option for your treatment. In a situation where it feels like options are thin on the ground, its good to know that there is another one. How are you coping with sharing all of this information with the world? Are you getting face to face feedback from folks who recognize you from your picture here, or your voice? What are they telling you about your illness, your blog, and your choices? I know that one guy who's written here a couple of times has a very definite agenda, and is really ticked at your "poor journalism" in not buying what he selling. I've noticed that you've gotten many suggestions for treatments, books, supplements, etc. Does it get overwhelming? I know that it has for me at times. I've experienced three or four friends having "cures" for cancer at roughly the same time... all different things. I really appreciate your candor and your willingness to talk about all of the attendant issues that come with the diseases that are cancer.

Sent by Nancy K. Clark | 2:29 PM ET | 08-29-2006

Hi Leroy,

I've been reading for a while now. I have been there with a different form of cancer. I remember, now with humor, when my Mom told me that I was fighting a foreign invader. At the time I couldn't say the words — it's me I'm fighting. I am holding at a good spot right now. I appreciate your putting into words, where others can read them and gain some insight and understanding, the very weird experience of cancer. No one in my life was able to imagine or comprehend all of the struggle and turmoil that was going on behind my quiet responses of "I'm okay." I recognize your bravery in putting yet another exotic toxic substance into your body. I wish you the best and hope that this new treatment delivers on all of its good promises.

Sent by Lilly T. | 10:18 AM ET | 08-30-2006

Dear Leroy,

I hope the Avastin goes as easily for you as it has for me. I have had four doses in addition to the chemo Doxil for stage III ovarian cancer as my second line of chemo. I have had amazingly few side effects and wish the same for you. What is the chemo agent you are on now?

A few weeks ago I made the suggestion of having a mediport placed and wonder if you have done that. It does make life easier on the veins.

Take care and best wishes.

Sent by Andi Daschbach | 10:23 AM ET | 08-30-2006

I just got good news, even though I wasn't really expecting the results of the biopsy when I called the doctors office. I noticed the wound/incision was a sticking out a bit. So I took some photos of my shaved belly and emailed along with some snaps of my wife and me on our 15th anniversary mini vacation.

Two weeks ago things were normal. The usual bickering, wondering if I had made the right decisions in life, etc. Then the swelling, the visit to the local GP, the ultrasound, the look on the technicians and radiologists face. So the urologist oncologist schedules me for a few days ahead, and its done. "Snipped," just past the prime of life.

So ten days later, the good news. I wasn't nervous, not really concerned. I've lived a frugal life, and if I had to stop working there would be more than enough money, even though I'm only 46.

I wasn't planning on liquidating any time soon, but my father had to retire at 52, and even though he lived 16 more years, he always drove a new Cadillac. I drive a 30 year old $2000 Chevy Suburban, and I have more money than he had, so it makes a HUGE difference that I'm financially secure.

Sent by Andrew Golt | 11:15 AM ET | 08-30-2006

Thank you for letting us walk a while with you on this journey. You are doing a great good for many of us who have "walked the walk," but were never quite able to "talk the talk."

Sent by Rosemary | 11:15 AM ET | 08-31-2006

Mr. Sievers,

I am so excited to read that you are trying Avastin! It is supposed to be wonderful stuff!

One of our previous neighbors is a cancer research doctor. When she heard of my husband's diagnosis, she highly recommended Avastin and/or Erbitux. She was fairly insistent that we discuss this with his oncologist due to the drugs success rate.

Unfortunately for my husband, his colon perforated on the day of his new patient/outpatient appointment and he had to undergo surgery. Because of his history of colon perforation, his doctor said "no way!"

I realize that for some people an additional four months may not be that exciting. But speaking from the view point of a family member, it is! What I would have given for an extra four months with my husband.

And for the medical professionals that make their life's work searching for cures, four months is a success. There is no telling how long it has taken them to get to that point! So I can understand their excitement. I think its all about the baby steps and we have to take one victory at a time... even if it's just four months.

Sent by D.L.N. | 1:16 PM ET | 09-07-2006

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