Showing posts with label renal cell carcinoma. Show all posts
Showing posts with label renal cell carcinoma. Show all posts

Saturday, May 9, 2015

Another Year - Cancer Free!

cancer_free

NED stands for No Evidence of Disease

Amazing! It’s Been 9 Years, Already.

Today is the Ninth Anniversary of my kidney cancer surgery.  These nine years have been bonus years for me.  What were the odds I’d get kidney cancer? According to my “risk factors”, I “should” have had colon cancer because both parents and an aunt had it twice each.  Of course, there’s no guarantee that I won’t get that, too.

And the risk factors for kidney cancer aka renal cell carcinoma?  The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:
  • Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.
I was younger than this.
  • Sex. Men are more likely to develop renal cell carcinoma than women are.
I am female
  • Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.
Not me!
  • Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.
A Cushing’s gift
  • High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn’t clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.
Never had this until the kidney cancer.  It went away immediately post-op.
  • Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.
What?  Me work?.
  • Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.
Nope.  Some sites also list polycystic  kidney disease.  I don’t have that but half my husband’s family does.  Hmmm – wonder if that’s contagious
  • Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.
I’ve wondered about this but, you know, it’s too “rare”.
  • Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you’ll develop one or more renal cell carcinomas.
Not that I know of. 

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).

In 2006 I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.
Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.

I owe him, the original doctor, and my Cushing’s doctors, my life.


The following are extracted from posts that were made during my kidney cancer diagnosis and surgery in 2006:

From Alice April 29, 2006
This is Mary’s friend, Alice (Dearest of Power Surge).
I’m not going to go into every detail at this time. I will fill you in on more details as I receive them from Mary and Tom. I’m sure Mary posted on the boards that she recently went back to Johns Hopkins in Baltimore to be retested because the tests that had been done the past year were incorrect and she was getting the wrong dose of hGh for the past year. In any event, she was tested again on Thursday and then returned home. The above is just a preface to create a time frame of events. It isn’t the reason I’ve come here to ask for prayers for Mary.

This is: Mary mentioned to me last week that she had noticed some blood in her urine. She was going to get it checked. As it were, when she returned from Johns Hopkins, she drove her husband, Tom, to get his regular biopsy for his history of prostate cancer.

While in the emergency room, Mary started having cramps in her stomach and when she went to the rest room, discovered a great deal more blood in her urine. Fortunately, she was at the hospital with her husband when this occurred. The cramps were becoming more severe. The doctors checked her out and they found a tumor in one of her kidneys – the tumor is actually the size of the kidney.

At this point and time, the doctors are recommending removal of the kidney and one of her adrenal glands. One surgeon recommended immediate removal of the kidney. Mary and Tom wanted to first talk with her other doctors and will decide on what surgeon performs the surgery. She never left the hospital where she simply went to take Tom for his test. Instead, she was admitted. She had a great deal of pain last night, but it was helped with pain killers. I will provide hospital details later.

She’s scheduled for an MRI later this morning or early afternoon.

I don’t want to go into much more detail except to say that whatever the condition of the tumor, the prognosis is pretty good.

I know how much all of you love her (as I do), how much she’s done with this site, how hard she’s worked to provide you with so much wonderful information about Cushing’s — plus what a good friend she’s been to so many of you. I also know that those of you who talk to her may want to call her. She needs time to go through all the preliminaries before being inundated with calls.

I will do my best to keep you apprised of Mary’s situation as I receive information. When she gives me the go ahead for giving out the hospital and is ready to take calls, I’ll pass the information along.

Please take a moment to send prayers for {{{{{MaryO}}}}} (she’s “our” MaryO on Power Surge, too) that everything will turn out all right and she will get through this crisis with flying colors.
Dearest
~~~~~~~~~~~~~~~
From Alice April 30, 2006
* Addendum: 9:30 AM – made some corrections to the 5 something AM post.
What a beautiful show of love and support.

I spoke to Mary last night. She had the MRI as scheduled. She spoke with her own doctor and they decided on a surgeon, but it means going to another hospital. She said she’d probably be coming home for a day before going in for the surgery.

I hesitated to mention in my first post that the doctors said they * think the kidney tumor is malignant due to it’s size – 5 cm. I’m sure many of you surmised that, or why would the emergency room doctors recommend immediate surgery. However, as I said earlier, Mary and Tom wanted to consult with her own doctor first. She was told that if, in fact, it is kidney cancer and is detected and treated early and confined to the kidney, the chances for a full recovery are good.

Considering what she’s going through, Mary sounded good. Lord knows, she’s been through so much already. God willing, this may resolve some of the other health issues she’s been experiencing.

Knowing Mary, when she returns home for a day before checking into the other hospital for surgery, if she’s up to it, she’ll post here herself and provide you with additional details.
For now, I’ve told you just about all I know.

Keep up those prayers!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
11 AM Update:
Mary had a brain scan this morning. She was supposed to have a bone scan today as well, but they’re doing it tomorrow instead, so they told her she could GO HOME TODAY (until she checks into the other hospital for the surgery)! She’s thrilled to be going home and I’m sure she’ll be here posting to all of you herself. You know Mary can’t stay away from computers very long. I’d venture a guess that if they looked inside, her arteries and veins would look more like computer cables (ducking).

We love Mary – so keep on praying that everything goes well, that the tests all yield good results and that she’ll be getting better ‘n better until she’s finished with this whole ordeal
(please, God!)
Reminds me of the phrase . . .
Good, better, best
Never let it rest
Til the good is better
And the better, BEST!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
Update – 2:15 PM:
Spoke with Mary. She’s home. She’s resting. The brain scan, chest/lung x-ray, abdominal scan all came out clean. The only test remaining that I know of is the bone scan, but it’s excellent that the above tests yielded good results.

She’s going back to the hospital for the bone scan tomorrow and, hopefully, scheduled for surgery ASAP.

Her attitude is very good. She sounds very good and I know, with God watching over her, and everyone showing so much love and caring, she’ll pull through this with flying colors.
It’s easier for me in conveying information to you to do so with an upbeat attitude. I try to avoid thinking of these things as tragedies or things that make me sick. Of course, I’m saddened and sorry that Mary is going through this — and has gone through so much, but such is life. You all certainly know that very well. Nobody hands us a guarantee that life is going to be without problems. And, yes, as the Morton’s salt container says, It never rains, it pours. But my M.O. is to try to keep as positive as possible, especially when in the throes of life’s unanticipated crises.

I believe the expression, “Attitude” is half the battle won.

Mary’s attitude is excellent and I know in my heart she’s going to come through this just fine.
Alice

P.S. An expression I remember my mother using, “The things we fear never happen. It’s the things we never think about that do!”
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 2, 2006
There wasn’t much to add yesterday. Mary was scheduled for a bone scan, but first had to have the radioactive tracer substance injection (I presume it was injected — she wasn’t sure herself). She was scheduled to have that around 10:30-11 AM, ET, and then had to return five hours later for the bone scan.

I didn’t speak with her last night, but she text messaged me around 6:30 that she was finally home and that the surgery had been scheduled for a week from today, Tuesday, May 9th at 9:30 AM.
I’ll post the hospital information as the time draws near.

That’s about it for now. She’s still sounding pretty good and wants to get the surgery done already!
Let’s keep those prayers going!
Alice
~~~~~~~~~~~~~~~~~~~~~~
From Me May 2, 2006
First off, I’d like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say “…and I can’t deny the fact that you like me, right now, you like me!” but I won’t :)

I plan to print everything out and take it with me to the hospital as a cheery-upper.
Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.

As it is, I’m currently feeling “normal” whatever that is. If I didn’t know I had a problem, I would think that I was just fine.

I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.

I know that the tumor has been growing for quite a while – it’s very large. I saw the MRI images and even I can tell that it’s not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.

When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdomenal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an “emergency” (not scheduled weeks in advance) bone scan. Oh, well.

My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital (http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I’m expected to stay there for 3-5 days post op and they don’t anticipate any pesky complications like chemo or radiation at this time.
For now, I’m keeping my normal schedule, avoiding reading horror stories online, eating, sleeping – even napping! – as usual. Sometimes I even forget that I have this little medical appointment next week.

For a non-phone person I’ve talked with so many people these last few days, it’s mind-boggling.

I’m happy to report that all is not lost on the (Cushie) cruise. Someone will replace me – and there will be another cruise later in the year. YEA! My main “concern” on that now is that I’ll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.
In thinking back, I think it’s a good thing that my arginine test was messed up in Sept of 05. If it hadn’t been, I wouldn’t have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.

So, it’s all good

Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like…
~~~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 09:10 AM
I’ve been in constant contact with Mary. Spoke to her at 7 this morning. She, Tom and their son, Michael, were on the way to the hospital. Mary sounded very good as she has all week. She’s going in with an excellent attitude.

She’s probably being prepped right now. The surgery is set for for 9:30 (ET). They anticipate the surgery will last 3 1/2 – 4 hours.

Now, all we can do is pray and wait. Tom will call me after the surgery is over. As soon as I hear something, I’ll make it a point to come back and post what I know.

Your support, love and prayers have been remarkable. Thank you on behalf of Mary. Please keep on praying until it’s over.

God? You listening? You’ve got someone very special to watch over this morning. We’re counting on you!
Alice
~~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 12:33 PM
Mary’s husband, Tom, called me at 12:15

He said it’s going to be another 3 hours – around 3:15 PM – before they’re done. Surgery didn’t start as scheduled at 9:30, but more like 11:30. There wasn’t that much he could tell me except that the doctors said, so far everything is going as expected and Tom said, “so far, so good.”

I hesitate to draw any conclusions from that statement because I’m not 100% sure of what the doctors expected, so it’s a matter of waiting until it’s over.

I’ll keep you posted. Keep praying, please!
Alice
~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 2:00PM
Tom called at 1:15, but we had a bad connection. We finally connected.

The operation is over. Mary was being sewn up. Tom said according to the doctor, “the tumor and the kidney were removed.” The doctor is calling the operation a “complete success.”
I asked if they saw any signs of cancer anywhere else because Mary had told me originally that they’d said they might remove the gall bladder, too, but they didn’t remove the gall bladder – which is a good sign.

It appears as though everything was concentrated in the kidney.
Thank God. It’s over!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 9 2006, 07:39 PM
Someone said: “… I told her that I would wait until she was home and feeling much better before I talked to her again and she agreed that she wasn’t sure she would be up to taking phone calls. Again, thank you so much for keeping us updated… this way we can know how Mary is doing without her having to take so many calls…”

That’s exactly how Tom and I feel. Tom suggests people not call the hospital. I wouldn’t even call his cell phone all day. I waited for him to contact me. I know he’s also exhausted. I figured he’d call when he was up to it. He called about 15 minutes ago.

It’s important that Mary get all the rest she can while recovering. Yes, everything turned out well, but she still had major surgery, is on morphine and needs her sleep. It’s important that we all allow her this time to rest.

It just so happened she was awake when he called and he turned on his cell phone’s speakerphone so Mary and I could talk for a minute. I was so happy to hear her voice. She sounded tired, her mouth was dry, but she sounded good.

Because this is a public message board, I prefer not to post details of the room she’s in. If anyone wants this information for the purpose of sending something to Mary, please E.mail me from the address you registered with on the board, and please include your user name. Thanks.

Another thing is that Mary has allergies, so for those wishing to send something to her, Tom and I (and Mary, as we discussed before she went into the hospital) agree she’s better off without flowers.

Finally, Tom said the doctor was very pleased with how her surgery went – that her body was quite robust, that there was very little bleeding, so no transfusion was needed, and he was generally very pleased with the surgery.

It’s been a very stressful day. I love Mary like a sister. We’ve been good friends for 11 years. I cried so after he initially called and said everything went well. I know all of you love and care about Mary, too.

All I’ve thought all day is, thank you, God, for watching over MaryO. I know all of you have thought the same thing.

That’s about it for now — she even cracked a personal joke when we said goodbye — she’ll be back to her old self again before too long.
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 13 2006, 08:10 PM
Saturday Update on Mary:
When she’s back on her computer, I know Mary will be thrilled to read all your thoughtful, beautiful and caring messages.

She’s doing well. The worst part is the incision which is quite large because the doctors originally anticipated the possibility of having to remove the adrenal gland above the kidney that was removed and the gall bladder as well. However, as I posted earlier, once they got in there, everything was found to be clean so they just took out the tumor and the kidney (as if that’s not enough). So, when she gets up to go to the bathroom, the incision is quite painful. I imagine an incision of that size will take a while to heal. Other than that she says she feels good!!

Additionally, the doctor was awaiting the results of the lymph node biopsy (just to be sure) and he told her yesterday, “everything looks clean.”

She was originally scheduled to go home tomorrow, Sunday, but . . . she went home TODAY!
Spoke to her after she arrived home (sorry I didn’t post earlier, but also have my Web site to deal with).

She sounded great and was glad to be home especially since a new person checked into her room yesterday and Mary wasn’t able to sleep all night.

That’s all for now – and all very good news, thank God!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~
From Me: June 17, 2006 post-op:
Thank you all for your prayers, good wishes, cards, phone calls, gifts, general “cheery-uppers”. They all really helped me on my road to recovery.

I do have a ton of thank you cards to send out to lots of people – I’m very slow at that. Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse sad.gif
I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren’t so great. Of course, they were awful before. I can no longer take the GH even though I’m deficient. In 5 years (if I survive!) I can take the GH again, supposedly.

I’ve had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed – at least I think that’s what set it off. If I hadn’t had all the blood and pain for one day only, I’d have had no clue that I had this cancer and who knows what would have happened in that next week.

I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.

During my time of thinking, I have also been thinking about making changes to the boards based on what I have heard was going on here. I am not yet sure how these changes will manifest themselves but I do know that bashing others will not be tolerated. More on this later, in another area.

Again, thank you for all your support!
~~~~~~~~~~~~~~~~~~~
From Me July 6, 2006
Since I recently had surgery for kidney cancer, I’ve been looking around for another board to read and talk about this with other survivors (hopefully!) I haven’t found anyplace I’d like to visit or feel comfortable with yet, so I decided to make a new area here.

I know – or I think I know – that no one else here has had kidney cancer, although I know at least 1 other person has had a kidney removed and several others have reported kidney stones and other possible kidney diseases.

I’m sure that my recovery will be much the same as for any other major abdominal surgery, although I’d like it to be faster.

Before my surgery, I didn’t have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe… Just boom, there it is. Cancer.

Now that I’m about 8 weeks post-op, I’m thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn’t a cell hiding out.

I know I have to be careful with meds – no NSAIDs so my arthritis is worse. No GH – it’s contraindicated for 5 years…assuming I’m cancer free then.

I’m supposed to be eating less protein, more fruits/veggies, drinking more water.

And I’m supposed to avoid playing football and other things that might damage my remaining kidney.

Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.

Sometimes, at night when I can’t sleep, I wonder why I was lucky like this. What haven’t I done with my life that I should. Seems to me that I’ve accomplished what I should already.
And, in the night, I worry about the cancer returning, taking my other kidney or worse.

At this time, there’s no standard chemo unless it’s metastasized, although there are some promising clinical trials and radiation doesn’t seem to work for this kind of cancer, so if it returns it’s more surgery.

I suppose I could/should have put all this in my blog, but I put it out here in case anyone else should need this in the future. I hope not!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From me Aug 19 2006, 01:25 AM
Thanks so much for asking!

Unfortunately, I haven’t read the boards much lately – I’m spending most of my online time deleting/banning the InstaChat intruders.

I have been working on the websites, though, and that’s always fun! I’ve even added a new one to the roster and it has some cool stuff on it. New features to be announced in the upcoming newsletter.

I’ve been even more tired than usual now that I’m off GH. I can’t take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I’m also just getting over a UTI.

I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn’t have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I’m hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.

I’m having trouble sleeping (1:20 AM here, now) although I’m always tired. My mind plays all kinds of tricks in the night. Those InstaChat people don’t help, either! When I wake up just a little, instead of falling back asleep, I’ll go check to see what they’ve done.

Whine, whine!

On the plus side – I survived the kidney cancer surgery, and it’s almost vacation time!
Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes…
~~~~~~~~~~~~~~~~~~~~~~~
From me May 8 2008, 11:07 PM
I am feeling very maudlin, a bit down and depressed. It’s very nearly the anniversary of my kidney cancer surgery. I posted this in my blog a few days ago:
I’ve been feeling weird for about a week now. Last Friday, I went through the whole “Sending Prayers” topic (MKO’Note: this thread) that my good friend Alice started for me.After I read that, I started reliving all the kidney cancer events…again. I know I shouldn’t do this. My counselor says that this is a very stressful thing to do and it’s not good for me, for anyone. But I do it anyway, especially the pituitary and cancer surgery anniversaries. I wish I did this with good stuff, could relive that instead of the scary and painful.

After I finished rereading all that, I went back to my post in the cancer section: I guess I’ve talked about this more than I think! I just wish there was someone I could get answers and support from. I have never met anyone in real life who has shared my particular brand of cancer, haven’t talked to anyone on the phone or emailed anyone.
I even asked at my local cancer support center about support for me – they have all kinds of meetings, mainly for breast and prostate cancer, but other kinds, too. But they said that there weren’t enough kidney cancer people to have a meeting. The one and only book that the library there has on kidney cancer was given to me by the author to donate there.

Lucky me – two rare diseases that no one gets. According to statistics I should be a black man who smokes and works in the iron and steel industry or is exposed to certain chemical and substances, such as asbestos (a mineral fiber that can be used in construction materials for insulation and as fire-retardant) and cadmium (a rare, soft, bluish-white chemical element used in batteries and plastic industry), also increase the risk for renal cell carcinoma. I should have polycystic kidneys and not drink the copious coffee.

So…where did it come from? A mutation of my parents’ and aunt’s colon cancer or do I still have that looming on my horizon?

And the Cushing’s came from nowhere, too. I know that no one knows these answers but I think of them a lot, especially at night.

Although I’m not afraid of death and would like it to be as peaceful and pain-free as possible, I still dream at night that I’m dying or have died. These dreams have been going on since before the cancer and I can’t seem to shake them although I’m taking them more in stride now and can go right back to sleep.

And from last year’s post on this topic, these still concern me:

What if the lung nodules that “aren’t growing” turn out to be something on the next scan? Is the stomach distress I’m currently feeling a cause to ask for my next colonoscopy a bit earlier?

Is the pain on the other side the other kidney causing trouble? Or something new with an ovary?

What if, what if…?

Seems like in my addled brain any new symptom could be cancer, not the simple stomach bug or pulled muscle.

Had they told me in 2006 that I only had a year or two to live, I’d have thought it far too short a time. I guess how long a year is depends on the frame of mind!

I hate going for scans because they could show something but I get nervous when there are no scans because there could be something else! Seems like my mind is setting me up for a lose-lose situation.

I’m sure as I get closer to Friday that other thoughts will come to me. I am so grateful that I’ve had these two “bonus years”. I feel like there is so much still to do with the Cushing’s sites and I will never get them done in my lifetime but I plan to keep trucking along!

And from Wonderful Words of Life…
I’m acquiring the title of an old hymn for this next post.

After I was finished with the long Cushing’s diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

i thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever.

This verse has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. On my birthday, there was “my” psalm so I had to buy this book!

Psalm 116 (New International Version)
1 I love the LORD, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
4 Then I called on the name of the LORD:
“O LORD, save me!”
5 The LORD is gracious and righteous;
our God is full of compassion.
6 The LORD protects the simplehearted;
when I was in great need, he saved me.
7 Be at rest once more, O my soul,
for the LORD has been good to you.
8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the LORD
in the land of the living.
10 I believed; therefore I said,
“I am greatly afflicted.”
11 And in my dismay I said,
“All men are liars.”
12 How can I repay the LORD
for all his goodness to me?
13 I will lift up the cup of salvation
and call on the name of the LORD.
14 I will fulfill my vows to the LORD
in the presence of all his people.
15 Precious in the sight of the LORD
is the death of his saints.
16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.
17 I will sacrifice a thank offering to you
and call on the name of the LORD.
18 I will fulfill my vows to the LORD
in the presence of all his people,
19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.
I carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver. On the other side there is an article I found after my kidney cancer. I first read this in Chicken Soup for the Surviving Soul and is posted several places online.

The Best Day Of My Lifeby Gregory M Lousignont

Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.
Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.

I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!
When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.

Friday, April 13, 2012

Day Twelve, Cushing's Awareness Challenge

Today's Cushing's Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing's. I think it is, either directly or indirectly.

I alluded to this in Day Nine when I said:

I finally started the Growth Hormone December 7, 2004.
Was the hassle and 3 year wait worth it?
Stay tuned for Day 12, April 12, 2012 when all will be revealed.

So, as I said, I started Growth Hormone for my panhypopituitarism on December 7, 2004.  I took it for a while but never really felt any better, no more energy, no weight loss.  Sigh.

April 14 2006 I went back to the endo and found out that the argenine test that was done in 2004 was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I went off GH again for 2 weeks, then was retested. The "good news" was that the argenine test is only 90 minutes now instead of 3 hours.

Wow, what a nightmare my argenine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn't decided to go home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok - Tom couldn't drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom's doctor followed us to the ER and became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn't the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I'm cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I couldn't take my growth hormone for another 5 years - so the test was useless anyway, except to hasten this newest diagnosis.

So... either Growth Hormone helped my cancer grow or testing for it revealed a cancer I might not have learned about until later.

My five years are up now.  My kidney surgeon *thinks* it would be ok to try the growth hormone again.  I'm still a little leery about this, especially where I didn't notice that much improvement.

What to do?

 

Tuesday, June 28, 2011

Wow! I'm luckier than I thought...

A snippet from Pfizer Files With The FDA For Review Of Axitinib For Patients With Advanced Renal Cell Carcinoma

Each year, approximately 210,000 people worldwide are diagnosed with kidney cancer and nearly 102,000 people are expected to die from the disease. Within the last five years, great advances have been made in the treatment of patients with advanced RCC, the most prevalent form of kidney cancer. However, five-year survival rates for patients with advanced RCC remain low, at around 20 percent.

I've been NED for just over 5 years now...

I'm so glad that there are drugs coming out for kidney cancer now.  When I had my surgery, my surgeon patted me on the hand and said not to worry, that I'd just have the surgery but no chemo.  What he DIDN"T tell me was that, at that time, there was NO chemo that would knock this beast out.

I'm glad he didn't tell me the whole story then.  I was panicked enough.  But Im sure glad that people are working on new treatments, just in case.

Now, if they could get started on something better for Cushing's, too...

Wednesday, May 4, 2011

EAU 2011 - Renal Cancer Highlights

 Conference Coverage

EAU 2011 Congress

Partial and radical nephrectomy for pT1 renal cell carcinoma: Results of the SATURN project

Presented by Giacomo Novara
Read Highlight by Christian Doehn

Prognostic factors in chromophobe renal cell carcinoma: Results from a retrospective multicenter series

Presented by Alessandro Volpe
Read Highlight by Christian Doehn

Nephrectomy improves overall survival in patients with metastatic renal cell carcinoma in cases of favourable MSKCC or ECOG prognostic features

Presented by Maxime Crépel
Read Highlight by Christian Doehn

Treatment management of T1A renal cell carcinoma in the 21st century: A population-based analysis

Presented by Maxine Sun
Read Highlight by Christian Doehn

Perioperative, oncological and functional outcomes of laparoscopic renal cryoablation and open partial nephrectomy: A matched pair analysis

Presented by Tobias Klatte
Read Highlight by Christian Doehn

Complications of the laparoscopic vs. the open techniques in patients with non-metastatic renal cell carcinoma (RCC) treated with partial or radical nephrectomy: A population-based analysis of the United States

Presented by Maxine Sun
Read Highlight by Christian Doehn

Multi-institutional analysis of robotic assisted partial nephrectomy for clinical stage 1B renal tumors: Perioperative outcomes in 445 patients

Presented by Firas G. Petros
Read Highlight by Christian Doehn

Prognostic role of histologic subtype in renal cell carcinoma: Results from the SATURN project

Presented by Giacomo Novara
Read Highlight by Christian Doehn

Simple enucleation vs. standard partial nephrectomy in the treatment of T1N0M0 RCC: Analysis of the SATURN dataset

Presented by Giacomo Novara
Read Highlight by Christian Doehn

Head-to-head comparison of the most relevant integrated prognostic systems predicting cancer-specific survival in clear cell renal cell carcinoma

Presented by Vincenzo Ficarra
Read Highlight by Christian Doehn
EAU 2011
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Friday, March 18, 2011

Thinking about Kidney Cancer again...


This month is Kidney Cancer Awareness month so yesterday, for St. Patrick's day, I wore one of my kidney cancer awareness shirts with the image above.

I've been thinking a bit about my cancer lately because it seems to be tied up with Sue's death, at least in my mind. Five years ago this month she died from lung cancer. Five years ago next month, I found out I had kidney cancer.

I need to make an appointment with my endo (Dr. Salvatori). Since it will be 5 years, he says I can go back on growth hormone but I'll have to weigh that very carefully.

Did the GH help/contribute to my cancer in the first place? Did it even help me with my post-Cushing's issues? Would my kidney cancer surgeon even agree to let me take GH again? it might harm my remaining kidney.

When my kidney was removed, my left adrenal was, too, causing problems for my post-op Cushing's issues. Today, this news item came up in my Google Alerts - so I joined the http://urotoday.com website to read the whole article.
Routine adrenalectomy is unnecessary during surgery for large and/or upper...
UroToday
We evaluated the radiographic and pathological incidence of adrenal involvement in patients undergoing renal surgery for renal cell carcinoma 7 cm or greater. Patients who underwent renal surgery for tumors 7 cm or greater between 1999 and 2008 were...
I sure wish that they had known that back "in my day" and I still had that adrenal gland.

A day late for this signature but I'll use it anyway since the color works :)

Monday, October 18, 2010

40 Days of Thankfulness: Day Nine

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).

In 2006 I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok - Tom couldn't drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom's doctor followed us to the ER and became my new doctor.

When I was diagnosed in the ER with kidney cancer, Tom's doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.

Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.

I owe him, the original doctor, and my Cushing's doctors (who will be featured later!), my life.

Monday, August 23, 2010

Medical Misadventures...

Thursday, August 19:

I had my annual visit to my kidney cancer surgeon. He said that things are looking good and reminded me that chances of a recurrence are getting smaller each year as are probabilities of a metastasis. Whew! However. He asked me about the CT scans I'd had last year. I had lung nodules at that time as well as an enlarged mediastinal lymph node.

I was supposed to get those scanned fairly regularly and my PCP was supposed to order the scans. I did a couple of those then we (PCP and I) thought that maybe the radiation risk was worse than the possible findings since there was no change. So he stopped ordering the scans and I forgot all about it. Until today.

So my kidney cancer surgeon said that my PCP would no longer be in charge of these scans. He referred me to a pulmonologist. The KCS thinks there will probably be a biopsy. Yuck.

I called the hospital at 11:00am and said that I needed a CD of my scans and they said they'd be ready when I got there. I got to the hospital at 11:20 and their machine had broken. So, I waited while they made a manual copy.

I got home about noon and, of course, the pulmonologist's staff was out to lunch. I left a message for them to ca back but of course they didn't. When I called them back I got an appointment for September 8. I hope that this doesn't signal the beginning of a new medical journey.

Like Scarlet O'Hara I'll think about this...tomorrow.

I finally did it! I've been looking at Macs for a while now. I'm so tired of the Windows constant security updates. On tuesday night there were 35. Egads! I've had 5 different Macs in my amazon.com shopping card trying to decide what to get for a long time. Today I made the decision.

We leave on Saturday for our annual trip to Barbados and I'll be carrying my laptop in my backpack. Since I just had a bit of surgery on my mid-back, I want to keep things as light as possible. My Gateway weighs 7.5 pounds and the battery lasts maybe 3 hours. The Mac weighs 4.5 pounds with a 10-hour battery.

On some kind of whim, I looked at amazon.com again and they said that I could get next day shipping if I ordered by 7:30 pm. I assumed that the shipping costs would be prohibitive but I looked anyway – only $3.99. So, I ordered it and hoped that they were right about next day delivery. I hated the thought of this Macbook sitting on my front porch for 2 weeks if I missed the delivery.

To read about the Barbados trip, please read in my Beautiful Barbados Blog.

Sunday, July 25, 2010

A Really Great Book on Patient Empowerment

I'm really enjoying this new book “Laugh, Sing, and Eat Like a Pig”  by "e-Patient Dave".

From amazon.com:

"e-Patient Dave" deBronkart was diagnosed in 2007 with renal cell carcinoma (kidney cancer) (MaryO’Note: my cancer!) at a very late stage. His median survival was just 24 weeks; with tumors in both lungs, several bones, even in muscle, his prognosis was "grim," as one web site put it.

Online since 1989, Dave used every resource at his disposal: a strong mental attitude, online research, great treatment at Boston's Beth Israel Deaconess, online medical records, an online journal for family and friends, and online forum of kidney cancer patients. He beat the disease in less than a year, then discovered "e-patients," who participate actively in their healthcare. He began blogging as e-Patient Dave.

An accomplished speaker and writer before his illness, today Dave is engaged in opening health information directly to patients, as public speaker, policy consultant, and Founding Co-chair of the Society for Participatory Medicine. He's testified in Washington, appeared in Time, US News & World Report, the Boston Globe, and was named to the HealthLeaders "20 People Who Make Healthcare Better."

"This is the first time in my life I've felt I have a calling," says Dave, "something I can't get away from: it's what I need to do. I've had plenty of fulfilling jobs in a great career, but not a calling. This is it."

I’ve been “following” Dave on Twitter and elsewhere for over a year.  When I was participating on my kidney cancer message boards (ACOR) a little more actively, Dave’s information was always the best, and he shared his experiences so honestly and openly.

I was so glad when he compiled those experiences and knowledge into this book. 

I understand what he means about a calling.  I’ve often felt that Cushing’s was my calling, too.  I’m too shy to get out there and testify but I can sure use my computer to get info out there.

Hopefully, more and more people will become empowered and take control of their own health.

I’m about halfway though this book.  My favorite quote (so far) is Reality is what it is,
regardless of what we think
and whether we know it or not.

 

To find Dave: 

Monday, May 10, 2010

Four Years Post-Op Kidney Cancer Surgery

Yesterday was my 4-year surgery anniversary.  Amazing how time flies.  If anyone had told me then that I’d have four years to live, it wouldn’t have seemed like “enough”, though.

Four years ago yesterday was also the first (and only!) Cushie Cruise, leaving for Bermuda on Mother’s Day.  I wasn’t able to go due to financial reasons, but a very kind Cushie Angel made it possible.  I got new clothes, and was very excited.  I’d never been to Bermuda.

So, along comes this surprise cancer.  I told my surgeon-to-be while still in the ER about this cruise and he said no way could I go.

I ended up getting out of the hospital the day before the cruise, the day before Mother’s Day, and the doctor was right.  There would have been no way I could have gone and enjoyed this cruise.  It was a few weeks before I could even walk, and several days before I could consider getting off pain meds.

Another lucky Cushie got to go in my place, so all was not lost.  I got to use my new clothes on a “second chance” cruise and I’m now 4 years cancer free!

Happy endings all around!

Here’s a review of the cruise by other non-Cushies with lots of pictures: http://www.cruisereviews.com/RoyalCaribbean/ExploreroftheSeas115.htm

If you’re a member of the Cushing’s Help message boards, you can see cute pictures of “Penelopee Cruise” at http://cushings.invisionzone.com/index.php?showtopic=16494.  Penelopee was made from someone’s 24-hour UFC jug.  The pictures and captures are a real hoot.

At four years post-op, I have no signs of my cancer returning or showing up in another organ.  (Hooray!)  I do have an enlarged lymph node between my lungs but that seems stable at this time.

Energy levels are still very low thanks to the combination of post-pituitary surgery panhypopituitarism, the removal of one adrenal during kidney surgery and low-functioning remaining adrenal.  Beats the alternative, though!

Daily (l-o-n-g) naps are a must and, I guess, will always be.  Doctors haven’t seem to come up with any ideas for extra energy for me.

I don’t have any lingering symptoms from my bout with cancer, so it’s all good.

As I learned to say in church yesterday, despite my illnesses, “I am blessed!”

Thursday, December 3, 2009

Abnormalities of thyroid function in Japanese patients with metastatic renal cell carcinoma treated with sorafenib: A prospective evaluation

Hideaki Miyake, M.D., Ph.D.aCorresponding Author Informationemail address, Toshifumi Kurahashi, M.D., Ph.D.a, Kazuki Yamanaka, M.D., Ph.D.b, Yutaka Kondo, M.D., Ph.D.b, Mototsugu Muramaki, M.D., Ph.D.a, Atsushi Takenaka, M.D., Ph.D.a, Taka-aki Inoue, M.D., Ph.D.b, Masato Fujisawa, M.D., Ph.D.a

Received 29 June 2009; received in revised form 17 August 2009; accepted 17 August 2009. published online 16 November 2009.
Corrected Proof

Abstract

The objective of this study was to characterize features of thyroid dysfunction in Japanese patients with metastatic renal cell carcinoma (RCC) who were treated with sorafenib. We performed a prospective observational study including 69 Japanese patients who were diagnosed as having metastatic RCC refractory to cytokine therapy and subsequently treated with sorafenib for at least 12 weeks. Thyroid function was assessed before and every 4 weeks after the initiation of sorafenib treatment. Of the 69 patients, 23 (33.3%) did not show any biochemical thyroid abnormality, while the remaining 46 (67.7%) developed hypothyroidism. However, 11 (23.9%) of these 46 hypothyroid patients initially had a suppressed thyroid-stimulating hormone (TSH) value accompanying the increase in free triiodothyronine (T3) and/or free thyroxine (T4) before developing hypothyroidism, suggesting sorafenib-induced thyroiditis. During the observation period of this study, 4 patients (5.8%) demonstrated severe clinical symptoms caused by hypothyroidism and received thyroid hormone replacement. Among several factors examined, only age was significantly associated with the risk for hypothyroidism. These findings suggest that although the incidence of clinically significant hypothyroidism requiring thyroid hormone replacement therapy was not very high, biochemical thyroid abnormality was frequently observed in Japanese RCC patients treated with sorafenib. Accordingly, regular surveillance of thyroid function by the measurement of TSH, free T3, and T4 is warranted during sorafenib treatment in Japanese RCC patients.

Keywords: Renal cell carcinoma, Thyroid function, Sorafenib, Hypothyroidism

a Division of Urology, Kobe University Graduate School of Medicine, Kobe, Japan

b Department of Urology, Hyogo Cancer Center, Akashi, Japan

Corresponding Author InformationCorresponding author. Tel.: +81-78-382-6155; fax: +81-78-382-6169.

PII: S1078-1439(09)00263-4

doi:10.1016/j.urolonc.2009.08.011

© 2009 Elsevier Inc. All rights reserved.

 

From http://www.urologiconcology.org/article/PIIS1078143909002634/abstract?rss=yes

Friday, September 18, 2009

Now I've Done It!

I hope I haven't started too much again. 

Way back, when I knew nothing about Cushing's and getting support from other who suffered as I did, I started a site...and another and another.

I suffered alone with my Cushing's for many years.

Now I have kidney cancer and I'm 3 years post-op.  I have never talked with another person who has this and I'd like to.  I go to a lot of classes at my local cancer support center but most people are dealing with other types of cancer and they've said that mine is too rare to have a specific group. 

So... I started a "meet-up" group for kidney cancer survivors.  I don't know if anyone else will be interested but I have to try.  I know that the "average' kidney cancer patient is older than I am, a black male with polycystic kidneys. 

There must be other of us.  There are always people in the waiting room of my surgeon's office.

Please come join me and let me know that I'm not alone with this cancer, too.  Maybe together we can help ourselves and not be so alone with the suffering, the waiting, the scans and surgeries.

Thanks!

Friday, June 19, 2009

His kidney cancer symptoms were just like mine!

The only difference was my pain was in the front.  I have never in my life had such excruciating pain.  Mine came across suddenly.  Pain in afternoon, diagnosed with cancer in ER three hours later.  No pesky going from doctor to doctor, testing and more testing with this cancer.  Bang - instant diagnosis.

More info in this old post

I loved this quote at the end and need to remember it and quote it each day: “This is living with cancer. But you’re living.” 

My version will be “This is living with post-Cushing's, panhypopituitarisim, low growth hormone, low adrenal function and cancer. But you’re living.”

From http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1131

Reining in Renal Cancer

BY KAREN PATTERSON

As new therapies stack up, controlling advanced kidney cancer is becoming a reality.

 

Tattooed in Chinese lettering over the former location of Marc Benner’s right kidney are the words “Kidney Cancer Survivor”—emblems of his year-and-a-half-long journey battling stage 4 renal cell carcinoma.

Benner, of Jackson, New Jersey, was 42 in 2007 when he began feeling excruciating pain in his back and noticed blood in his urine. “Like most guys, back then you couldn’t get me to the hospital,” he says. “I thought I was just passing a stone, to be honest.” In December that year, surgeons at Thomas Jefferson University Hospital in Philadelphia removed his kidney using minimally invasive robotic surgery. At the same time they excised a lung mass. He was back at work 10 days later.

But his battle was only beginning. His first set of scans in early 2008 showed masses in his liver and lung. That’s when his doctors prescribed Sutent (sunitinib), one of several relatively new drugs for advanced kidney cancer. Benner took Sutent for about a year, in cycles where he was on the drug for four weeks and off for two. Although he still has nodules in his lung—and a tumor just above his hip—the spots on his liver have disappeared. “I think it helped buy me time,” he says of the drug. And the self-described “gym rat”  has been lifting more weight than ever in his workouts.

When his cancer progressed on Sutent, he switched to Nexavar (sorafenib). “I’ve heard a lot of good things about Nexavar,” he says, three weeks after beginning the drug. Ultimately, he hopes that this drug, too, will buy him time until other treatments are available. “There’s some new stuff out there that might work better,” he says.

Benner is typical not just because his cancer is a type known as clear cell, which accounts for the vast majority of the almost 55,000 renal cancers diagnosed in the United States yearly, but also in his mix of hope for the future and anticipation of what’s coming next through the pharmaceutical pipeline.

Robert Figlin, MD, interim director of City of Hope Comprehensive Cancer Center in Duarte, California, and director of the center’s kidney cancer program, says that more treatments are available for metastatic renal cell carcinoma (RCC) than ever. In addition to the current arsenal of Sutent, Nexavar, and Torisel (temsirolimus), and the newly approved Afinitor (everolimus), all green-lighted by the Food and Drug Administration since December 2005, one additional product is likely to receive approval for kidney cancer this year—Avastin (bevacizumab). While they don’t promise a cure, collectively the five drugs have the potential to extend patients’ lives considerably.

Before the new agents came on the market, “there was no progress and few options,” says Robert Motzer, MD, who oversees the clinical trials program for advanced kidney cancer at Memorial Sloan-Kettering Cancer Center in New York City. “Now it’s changed dramatically. … You can see it in the faces of the patients.”

“This is a waterfall time for patients,” adds Figlin, who is also chair of medical oncology and therapeutics research at City of Hope. “The challenges for both doctors and patients are now how to choose the proper drugs, in what sequence, and whether or not to use them in combination.”

These new, so-called targeted, drugs vary in their mechanism of action in the body. Sutent, Nexavar, and Avastin disrupt a process known as angiogenesis—the formation of blood vessels that feed tumors. In a phase III trial to demonstrate Avastin’s potential benefit, a combination of the drug and an older treatment, interferon, nearly doubled the window of time in which patients’ metastatic RCC failed to progress, compared with placebo plus interferon.

Torisel and Afinitor are in a class of drugs called mTOR inhibitors, which means they target a cell protein that is part of a biochemical pathway implicated in the growth of tumor cells as well as blood vessels. While phase III trials have shown, for instance, that Sutent versus interferon can more than double the time before progression for many advanced kidney cancers, the mTOR inhibitors might be able to extend that period further.

In addition, Torisel, which is given intravenously weekly, has been studied in the treatment of patients with poor prognosis RCC—“those with the most symptoms, most extensive disease, who would otherwise have a short survival,” says Motzer. “It was the first of the targeted agents to show a survival benefit in that very poor prognosis population.” That population, he adds, accounts for up to one-quarter of people who are first diagnosed with metastatic kidney cancer.

The eagerly anticipated approval of Afinitor occurred in late March. That drug is administered orally, and updated results from a phase III trial examining people whose cancers had progressed on Sutent, Nexavar, or both found that Afinitor delayed the cancer’s progression by a median period of almost five months, compared with just less than two months in patients receiving a placebo. Afinitor also compared favorably to the other drugs in terms of quality of life and safety profile, with mouth ulcers and anemia among the side effects.

“The sense we have is that if a cancer cell builds up resistance to one medicine with one mechanism of action, switching over to another mechanism is attractive,” Motzer says.

A Chronic Disease?

Figlin says evidence most strongly supports using the new agents in sequence, with the antiangiogenic agents first, followed by an mTOR inhibitor if the cancer progresses. “That’s not to say other drugs can’t be interwoven, but the data are not as robust.”

Research into combinations of the targeted agents has, meanwhile, been disappointing. “Our early studies showed there seemed to be more toxicity in the combinations,” Motzer says. “So I’m more firmly behind the sequential use of these agents.”

The new drugs also appear beneficial for the approximately 20 percent of RCC patients whose tumors are not clear-cell type. While the benefits might not be as dramatic, “these targeted agents should still be used,” Figlin says.

For advanced clear-cell RCC, the medicines have made a dramatic difference in physicians’ conversations with patients. Figlin says he can tell newly diagnosed patients and their families that there’s a high chance of benefit from the treatment, with the potential to improve symptoms and extend life. “Although they are not curative treatments, they can turn this disease into more of a chronic management disease,” he says. “We were not able to have that conversation just five years ago.”

Coming down the pipeline are other promising new agents currently being tested in large phase III trials. “We are already embarking on next-generation drugs,” Figlin says, including the angiogenesis inhibitors pazopanib and axitinib, which have a mechanism of action similar to Sutent and Nexavar. “Both of these may have more activity than our currently available drugs.” They might also have a better side effect profile, he says. “That’s what we’re looking for—better tolerance and more effectiveness.”

The AXIS trial, a phase III study still recruiting patients, will test how axitinib measures up to Nexavar as second-line treatment for metastatic RCC. Results of the study are expected in mid-2010. Also going head-to-head in a phase III study are pazopanib and Sutent in locally advanced or metastatic RCC.

Experts agree there’s room to improve the targeting of known biochemical pathways related to kidney cancer as well as other pathways that may be important but aren’t as clearly understood.

The Old Kid on the Block

Before the targeted agents arrived on the scene, treatments known as biological or immune therapies, which enlist the body’s immune system to fight the cancer, were the standard of care. One such treatment, interferon, available since the 1980s, prompted a response in just a fraction of patients, and most would later see their disease progress. Interferon, Figlin notes, is the agent to which the new drugs have been compared in many of the clinical trials, but it no longer has much of a role as a treatment by itself.

Interleukin-2, or IL-2, an immune therapy on the market since 1992 but rarely used, has had checkered success. Administered to a small, sturdy subset of patients by experienced treatment teams in high (and very toxic) doses, IL-2, also referred to as Proleukin, has the potential to provide a cure in a very small number of patients—5 to 10 percent—with advanced RCC. Researchers, however, are still trying to figure out exactly how it works. “Unfortunately, with decades of experience, we still do not understand why some people benefit tremendously and some don’t benefit at all,” Figlin says.

Sue Guenther, 60, of Mesa, Arizona, has experienced high-dose IL-2 firsthand as part of a clinical trial in 2006. “I call it flu in a bag. It makes you sick as a dog,” says Guenther, who is also a survivor of thyroid cancer and sarcoma.

Like many people with kidney cancer, her malignancy was discovered by happenstance—a misstep on some marble stairs, she says, literally saved her life. Guenther stepped down hard, and subsequent pain in her right kidney sent her to the doctor for scans.

That was in 2004, when she underwent a radical nephrectomy at Northwestern Memorial Hospital in Chicago for a large, stage 3 tumor near her liver. By early 2006, doctors found a 9-millimeter metastatic tumor in her lung, reduced to 2 millimeters after combination therapy, including IL-2, in the clinical trial.

Michael Atkins, MD, deputy director of the division of hematology-oncology at Beth Israel Deaconess Medical Center in Boston, believes high-dose IL-2 should remain an important first-line therapy because it is the only one shown to even occasionally cause complete and lasting responses—but it may be rendered less effective and more toxic after treatments such as Sutent. He acknowledges the issue is controversial.

“My view is there is a select group of patients and tumors, yet to be completely defined, that are best initially treated with IL-2, with the antiangiogenic or targeted agents reserved for those patients whose disease fails to respond to IL-2,” says Atkins, who is also leader of the Kidney Cancer Program at Dana-Farber/Harvard Cancer Center and a professor of medicine at Harvard Medical School.

Although hard data are pending on factors that can predict responsiveness to IL-2, Atkins notes that researchers do have some idea of the clinical and biochemical characteristics that may mark patients most likely to benefit. The new therapies are a trade-off, he says. “While the new therapies help the average patient in a major way, without Proleukin, the cure of advanced kidney cancer is likely to become an even rarer event.”

Motzer, on the other hand, sees little role for IL-2, saying the current progress and excitement in the treatment of kidney cancer is based on the discovery and implementation of the targeted agents in the past five years.

The Ups and Downs

One disadvantage of the new drugs is a variety of toxic side effects. Another is price: They can cost tens of thousands of dollars a year. And the drugs require ongoing outpatient management, including monitoring for cardiovascular side effects in patients who received Sutent and/or Nexavar.

On Sutent, Benner had acid reflex, diarrhea, and fatigue, and had to drop his 50 mg daily dose to 37.5 mg. (Researchers are continuing to evaluate dosing strategies for the drug.) Everything, except chocolate, tasted like metal. On Nexavar, at an 800 mg daily dose, Benner developed a rash starting on his head and face, which moved to his chest and arms. “It almost was like second-degree burns,” he says, noting that his dose was reduced, then re-escalated. He takes special care of his feet, using ointments to avoid blisters that might arise from redness he has there. “I’m a pretty resilient person,” Benner says. “You can’t let a disease beat you.”

Guenther’s treatment odyssey, meanwhile, continued in 2007 and 2008, when she twice underwent cryoablation to treat tumors on her remaining kidney, which is functioning at about 70 percent. She, too, ended up on Sutent.

The first month, starting with a 50 mg daily dose that was later reduced to 37.5 mg, she found the fatigue devastating. The second month she also had a foul taste in her mouth and was living basically on just a few crackers a day. “I thought, ‘At least I’ll lose weight on Sutent,’ ” she says. But her doctor said no, people tend to gain weight on the drug. “It was then that I remembered God had a sense of humor.”

As of her last scans, her two major lung metastases were significantly reduced, and smaller lung spots were gone. “It looked like the Sutent was working,” she says. “This is living with cancer. But you’re living.”