My Battle With Kidney Cancer

Changes

2009-06-07T15:38:00.000-04:00

It's been a while since my last post. Things don't seem to be going as planned for me. I had CT scans on May 20th, which I had moved up due to the pain and overall feeling that something just isn't right with me. It appears I have a clot or tumor in the renal vein for the remaining kidney and a couple of other new tumors. I was admitted to the hospital for two days to receive blood thinners and hydration as my kidney function had deteriorated. The kidney seems to have bounced back. I have also developed unexplained anemia for the last couple of months and stomach/intestinal problems. I have been to the emergency room for severe stomach pains which seems to have been caused by the intestines shutting down and not pushing things through. I am having an endoscopy and colonoscopy tomorrow morning to look for bleeding, ulcers, cancer and anything else that would cause me trouble.
Things are changing for me. I have had a good stretch with no drug treatment for this cancer, so I can't complain, but I think it's time to get back on one of the drugs or maybe find a drug trial. There are a few drugs now that are effective at shrinking and keeping the cancer from spreading but none of them are a cure and all of them eventually quit working assuming one works for me. Everyone responds differently to these drugs. Also all of them come with side effects, quality of life changing side effects. I am not looking forward to those but I'll do what I need to do as always.
Overall I am doing as well as can be expected I guess. I have had to leave work a couple of times due to the stomach pain and missed some days due to the hospital visit. I feel bad when my coworkers have to fill in for me, especially working midnight shift like we do. I know it's not easy. I am very fortunate that I work where I do and with the people I do. I am trying my darndest to avoid going out on disability due to the cancer. Not only because of the reduction in pay but it sort of signifies that the cancer is winning this battle and I'm not ready to give any ground. It's a tough road.
I had an appointment with my Oncologist at Vanderbilt on Tuesday the 9th of June but got a call pushing it to the end of June. I wasn't happy and let them know about it. I really wanted my kidney cancer specialist to go over my scans with me and make a decision on which drug I should start. Well, he emailed me and said I could possibly get in on Wednesday instead, so we will see. I am prepared to move on without him and just let the local oncologist help me.
I guess that's all I have for now.

Spring Cleaning

2009-03-21T12:41:00.003-04:00

I have calmed since my last post. What good does it do to get angry...at least for long periods of time. I have stayed pretty busy for the last week, we got a small dumpster and are nearing the end of a much needed garage clean out. I could actually put cars in the garage if I had to. It was just full of years of junk that we kept moving from place to place. I'll probably see what I can get out of the basement today but the grass is looking bad so I think it's time to get the mower going.

Oh yeah, I met with Dr. Garrot at Kennestone this past Wednesday armed with the CD of scans all the back to July 08 and he had from December up until now. A rare thing happened...he arranged for me to sit with the radiologist and go over the scans back to July with special interest on the liver lesion. The lesion is about 4 x 3 cm and once we knew what we were looking for...it was visible in July 08 AND the same size. It was hard to see though unless you knew where to look.
So, because it's been there so long without a change in size there is some talk of doing a biopsy at some point to see if it is RCC or a benign cyst or something. For now Dr. Garrot is going to speak with Dr. Sosman at Vanderbilt to see what he thinks. There are options though if it is cancer, drugs, surgery, cyberknife...I'll get it out of me if needed. I have a feeling it's going to be a watch and wait for growth and then get aggressive. I'm still trying to wrap my brain around watch and wait especially for a 4x3 cm lesion.

Oh...By The Way!

2009-03-06T10:55:00.000-05:00

The radiologists report became available (I haven't seen it yet)and it states that there is basically a 4 x 4 cm lesion on the right lobe of the liver and that it is unchanged from the December 8th, 2008 scan.
WHAT! So it was there in December? This has happened before, where no one conveys the info on the report. This is why if any of you end up in similar situations...take charge and be your own advocate! At Vanderbilt I can view the reports online when they come available, I guess at Kennestone the doctor has to get them for you....great. They're going to love me.
Now I am stuck playing catch up with this thing. I don't know what the plan is yet, the doctors are supposedly hashing things out. I have inquired about doing the cyberknife on it. Otherwise it's drugs or surgery... We'll see.
Crap!

It's getting old!

2009-02-28T09:21:00.001-05:00

Yes, Yes it's been a while. Sometimes I just don't feel like talking about this cancer crap. Really. So it makes it hard to write about it...but maybe I should write about why I don't feel like talking about it. It dominates my life, I am tired of having to worry about my health to be honest. I will do what I need to do to survive as long as I can but it sure does take it out of a person. I can honestly see why some people curl up and die with a cancer diagnosis. Psychologically it's hard, physically it's hard...I live with pain everyday. Ah! but it could be worse right. Yes, it could be. I am a strong person but man, it gets tough.OK for those of you that don't know, I had the cyberknife radiation done on the right 12th rib at the beginning of December and the left kidney right at the new year. I finally had CT scans yesterday 2/27...the lesion on the kidney is gone, or at least we couldn't see it any longer. The rib still has a mass but it appears dead...no blood flow to it or in it. That is the good news. The 5mm lung lesion has turned into three very small 5mm lung lesions. We did a quick look of the abdomen and didn't see anything else new. Still pending the radiologists report though.I will be consulting now with the local oncologist and my specialist at Vanderbilt next week really to decide which drug treatment to start. One is a pill, easy to take at home but potentially quality of life affecting side effects, the other is a once a week infusion that has less side effects and is better for bone metastasis but coordinating the infusion day with my work days and off days could get tricky as my work days rotate once a month, so eventually my off days are work days and I don't like to miss sleep and then work all night. We'll see.

Cyberknife

2009-01-10T12:36:00.002-05:00

I met with the Cyberknife people at Kennestone hospital in Marietta, Ga. They said I could do standard radiation for the rib but it would take 5 weeks and probably would not work. Or I could do Cyberknife, High dose radiation in three sessions and it probably would work and is often as good as surgery.

I had the rib treated around Thanksgiving. Minimal side effects...nausea and some vomiting. A month later, just this past week right at new years I had the kidney lesion treated....more severe side effects but I survived. During the scans for the kidney treatment the doctor noticed that the rib lesion has shrunk dramatically. So it appears that the radiation is doing some good up to this point.

I am scheduled for scans with Dr. Sosman on March 3rd, 2009. Hopefully we will see some positive results from all this.

On to the next treatment.

2009-01-10T12:31:00.002-05:00

After suffering through the effects of IL-2 treatment, CT scans at Vanderbilt revealed that it did not work for me. I had growth on the rib lesion and kidney lesion. The lung lesion seems to have remained stable at 5 mm.
So what's next...Dr. Sosman suggested radiation for the rib lesion and the possibility of drug treatment. We briefly discussed Avastin but decided to treat the rib and go from there.

I contacted the Cyberknife center on Marietta and will meet with them about treatment.

IL-2 and Me

2008-08-27T06:09:00.002-04:00

I consider myself and have been called a fairly strong person. Well, IL-2 just beat me down and had me screaming uncle! And that was just the first week, I do it again next Tuesday the 2nd.
I got 8 doses done before I lost all mental capabilities and the Dr.'s stopped the treatment, so I probably won't do as many on the second trip.

Of course if I get positive results than it's the best thing that ever happened to me but for now it's truly Demon Juice.

It's time for the IL-2

2008-08-15T07:56:00.002-04:00

After further review of the past 12 months worth of CT scans the Doctors said I have three tumors. One on the Left Kidney, Right lung and Right 12th rib, which is getting painful. I am scheduled to start IL-2 treatment on the 19th of August and then again on September 2nd. I am not looking forward to it but it's the best chance at a remission or at least stop any new cancer from developing.

Give me a break!

2008-07-27T11:55:00.002-04:00

I had the post rib removal scans on July 21st. Much to my surprise there is a visible lesion about 2cm in the renal bed area in towards the spine but not at the spine. The doctor said it was visible back in April but very subtle and easily missed.
So now I wait for the surgeon to return to work so he can offer his opinion as to whether or not surgery is possible. I am interested in something minimally invasive like RFA or Cryoablation. Otherwise I will be looking at doing IL2 in the hospital. It's the only real shot at a lasting remission.
I can't seem to catch a break...but it could be worse.

The Rib is gone

2008-06-16T14:00:00.000-04:00

Sorry it took so long for me to post. I had the surgery and a portion of the right 10th rib was removed. While the surgeon was in there..the blob on the scan was actually a hernia allowing the liver to squeeze into my chest cavity...and while he was looking at my liver he noticed a small spot on the liver. He removed the spot, which was cancer, fixed the hernia, put some prosthetic mesh material where the rib was and closed me up.
This was a very painful sugery, I was out of work for about 4 weeks. Doing better now but still get very stiff and sore at times.
Now I wait. The next CT scan is July 21st. Maybe I can get an extended period without having to deal with this cancer.

Vegas Baby!

2008-04-13T13:44:00.000-04:00

Did I mention I’m off to Las Vegas this evening? I was invited to participate in a company bowling tournament. It should be fun even though I am a very average bowler.
Anyway, a little fun before the surgery.

Another Surgery Scheduled...

2008-04-10T13:43:00.000-04:00

Well, the Doctor at Vanderbilt called me this past Sunday, April 6th, to say that he “over read” the scans and that it wasn’t as bad as he thought and that the tumor was still isolated to just the rib. What a relief.
I made the trip to Vanderbilt yesterday, April 9th, to meet the Thoracic surgeon…nice guy…dry sense of humor…made me laugh. Anyway, he showed me the scans that caused the hubub, the PET scan shows activity on the rib and not in the lung…the recent CT scan shows either a scan anomoly or a huge tumor coming from the rib into the lung. If it’s tumor on the lung it’s big and you’d think I’d feel it or have symptoms but the doctor said himself, he didn’t know but since he was going to be cutting me open he’d go ahead and take a look and if it’s there, he’ll take it out. Thanks doc. It’s interesting to note that the radiologist report for that CT simply states lungs are clear, so I have to think it’s a scan anomoly.
So anyway, surgery is on April 29th, I will go up on the 28th for pre-op stuff. He will cut out as much rib as necessary and whatever else he sees. Don’t know how long I’ll be there, a couple of days I would imagine. He said it would be a good 4 to 6 week recovery but I think I can beat that.
I’ll be honest, I really don’t feel like doing another surgery but know I have to. It’s getting old but I must continue to fight this cancer. After this though, unless it’s an easy to get tumor, I think it’s time for a trip to hell and try High Dose IL2. I haven’t been avoiding it…just going on the advice of doctors…now this doctor says if or when the cancer comes back, it’s time to give it a shot. It’s really the only chance I have at a lasting remission. I just don’t like all the hospital time and missed work.
I’ll do what I have to do.

What to do about the rib

2008-04-04T13:42:00.000-04:00

After further review and needlessly watching…the rib tumor has grown and grown into the chest cavity. Not sure if it’s at the lung. I will meet with a Thoracic surgeon next week to see if it can be got. Otherwise I will be looking at Cyberknife or drug treatment.
I’m a litte pissed because we knew it was there back in January but because the gallbladder reared it’s head, the rib took a backseat and now when we finally get to it, it’s grown and into a bad spot.
The Dr. suggested that this be my last surgery. He wants to move on to HD IL2 or other systemic treatment in the future. We’ll see.

Gallbladder Gone

2008-02-23T13:41:00.000-05:00

Had scans on January 16th…gallbladder had a tumor on it and something still showing around that 10th right rib. Had surgery on February 7th at Vanderbilt to remove the gallbladder. It was done laparoscopically so it wasn’t too bad, still a little sore. Going back on the 25th for follow up and discuss what to do about the rib.
Fortunately the gallbladder isn’t required but eventually I’m going to run out of parts to remove. Hopefully if we take care of the rib that will be it for a while.

My New Doctor

2007-12-27T13:40:00.000-05:00

I met with Dr. Sosman at Vanderbilt on 12/13/07. He seems very knowledgeable and compassionate. He will be managing my care/treatment from here on out. It’s also much easier for me to get to Nashville from Atlanta than to Houston. He insisted that I find a local oncologist to coordinate starting treatment with Zometa since I had the bone metastasis. I start that tomorrow 12/28/07. It’s supposed to help strengthen the bone and since I am also on daily steroids it will also help ward off osteoporosis. I can’t believe I’m talking about osteoporosis at 45 but I guess it’s better than pushing up daisies!
I will go back to Vanderbilt on January 16th for CT scan, brain MRI and bone scan. Basically the works to see where I stand and give Dr. Sosman a baseline to work from. He mentioned that when my next recurrance happens, if it does, that we will talk about High Dose IL2. Since that’s the only shot at a prolonged remission I will eventually need to try it while I’m strong.
Anyway, I seem to be doing well. Gaining too much weight though, I think it’s the steroids making me eat more…that’s my story and I’m sticking to it.

Doing OK

2007-11-12T13:39:00.000-05:00

It’s been another while since I’ve posted. I went for CT scans at the NCI on October 17th and they say all is clear except the rib which is still healing in their words.
The rib is still sore and has a noticeable lump so I think it will need more treatment as we move forward but we will see.
My youngest daughter went into the Air Force on October 30th and got sick from the immunizations or something else and now they are going to discharge her. She hasn’t even seen a doctor or received any treatment other than ibuprofen. She is so discouraged that now she can’t wait to get out. But I want her treated first. Anyway that my latest stress.

Rock of Ages, The Rib and turning 45

2007-09-02T13:38:00.000-04:00

It’s been a while since I posted so I have some catching up to do. I haven’t been to a rock concert in many years… on August 25th, My wife got us tickets to a concert called “Rock of ages” that had Foreigner, Styx and Def Leppard as the headliner. Unless you are in my age group you probably don’t know who or what I’m talking about but they are late 70’s and 80’s rockbands. Foreigner only had one original band member, Mick Jones, but they sounded great. The drummer is John Bonham Jr., the son of John Bonham from Led Zeppelin and they did break out into a Zeppelin tune. Styx was great and Def Leppard rocked the place down. I guess the big story is, not being on any cancer drugs, I was free to have a beer or three and really had a great time. It was a party!
On August 28th I left for the NCI to have the RFA on my right rib. I went alone mostly because it was supposed to be pretty much an outpatient procedure and really my wife just doesn’t have the time off work that I have and we need the moola.
It was a bigger deal than they let on…they put me under general anesthesia and RFA’d the rib tumor. I don’t know how big it is but it was around the rib so the Dr. had to go into three different holes at different angles to get access. He was confident he “baked” all of it but we really won’t be able to tell until subsequent scans are done in a couple of months. I guess this is a painless procedure if done on an internal organ but let me tell you on a bone near the surface it is painful but manageable.
I was released the morning of the 30th, My birthday. I went to the airport early and tried to catch an earlier flight but no luck being a holiday weekend. On the flight back some storms moved into Atlanta and we diverted to Macon, Ga for fuel and sat until the storms cleared. I finally got home after 9pm that night. Very, Very sore from sitting.
I turned 45, I was 42 when diagnosed with RCC in December of 2004. All I can say is I’ve made it another year reacting to the pot shots this cancer keeps taking at me.

The Rib

2007-08-11T13:37:00.000-04:00

OK I made my trip to the NCI and had the CT scans done. I could not take the contrast because during my last visit I had a small allergic reaction and they said because I hadn’t been premedicated this time they would not give it to me. So they did scans without it this time. I was a bit disappointed but they assured me they would be able to see what they needed to see. I also asked them to take a good look at the ribs on my right side.
I met with Dr. Bates and her boss Dr. Fojo and team after the scans and they confirmed that I had the rib metastasis…but the good news is that’s all they detected. I was very comfortable with that news I guess because I already knew about the rib.
The NCI technically can only treat while participating in a trial and Dr. Fojo started asking who I saw at home and I really don’t see anyone as I was travelling to Houston. He was mentioning radiation treatments but that would take several sessions and then brought up the RFA (Radio Frequency Ablation), it would be done in one session and could be curative in that area. He said he would arrange to have it done there by Dr. Brad Woods, the NCI’s top dog in RFA. He also took part in my surgery in June for the back tumor, so we’ve met. I have to wait for him to return from vacation but I expect to be up there towards the end of the month to get this thing taken care of.
I fully expected to be discussing IL2 during that visit but they said not yet. They take each situation as it presents itself and figure out what is best at that time. I’ll go along with that….for now.
So, the anxiety level is back down and I’m just waiting for a call to schedule the procedure. They will do full scans prior just to make sure that’s all I have again and hopefully I’ll get one more set of scans before they refer me back to my regular doctor.
My wife got her mamogram report, it was nothing, some sort of shadow or benign spot that’s been there in prior scans, so all is good there as well.
The battle continues…winning one skirmish at a time.

Scanxiety

2007-08-07T13:36:00.000-04:00

What is “scanxiety”? It when you are scared shitless of what the next scans may show. I’m off to the NIH tomorrow for post op scans and discussion about the rib lesion that shows on the bone scan. Do I have scanxiety? I don’t know, I’m a little nervous I guess, I want the rib thing to be the only thing so it can be dealt with as soon as possible. But the NIH may not do it unless I’m in a trial or I can sweet talk them into doing it.
I have a feeling HD IL2 is going to be brought up…it may be the best option while I’m strong and feeling well.
On top of this my wife had an “abnormal ” mamogram so she had to go back for more detailed imaging….now that was plain old anxiety…. the preliminary results show something but they are calling it benign. Somewhat of a relief but I think she should follow up with another radiologist to read the images. I am really happy for her though, we have enough going on. She would have been devastated as I would have been.
I took my family grubbin for gems in North Georgia last Saturday. Had good relaxing time sitting in a stream panning for gold and gemstones. Actually got some really cool raw gems, emeralds, topaz and others. It was fun. Trying to figure out what to do next. I think subconsiously I’m trying to create more good memories.
Hoping for the best…planning for the worst.

Mixed Emotions

2007-08-02T13:35:00.000-04:00

Well we did it… we booked our trip to Punta Cana, Dominican Republic for January… 7 nights at the Majestic Colonial, all inclusive. Hopefully it will be a great vacation, looking forward to it.
I got my PCP to order the bone scan for the rib pain and went yesterday…I don’t have the official report yet but I don’t need one, I have the film. There is one “hot spot” on the rib that has the pain so I know its metastatic RCC to my rib now. I pretty much knew it was but seeing it for real is a bummer, I had some hope that it was nothing.
So now I’ll be going to the NIH next week for follow up and CT armed with the bone scan results and we’ll go from there. I don’t know what they will recommend. I think it will depend on if all I have is one bone met or if there is more revealed by the CT.

My Busy Brain

2007-07-26T13:34:00.000-04:00

Well I made it through another week of work, doing fine. Still have the sore right rib. I am considering trying to get a bone scan on my own through my PCP before I go to the NIH on Aug 8th, can’t decide. If it was to show something, I’ll still be waiting until the 8th but at least I’ll know why it hurts. I keep going backand forth, don’t even know if I could get one done before the 8th.
I’m thinking about planning a vacation…haven’t personally had one or been able to afford one since my diagnosis/treatments started over 2 years ago. I want to chose a date and plan it and invite family members but I’m worried about what might happen to me in between now and the time to go as far as treatments…I’m sure I’ll be here but in what condition. I won’t go unless I can fully enjoy it. I don’t want to have to stay close to a bathroom, stay out of the sun or any of those things associated with treatments. Guess I’ll have to purchase travel insurance…
Thinking about an all-inclusive in the carribean…pretty much narrowed down to Punta Cana, Dominican Republic or Aruba…any input is appreciated. Considered cruising, been there, done that. It’s OK but the bar bills were crazy. I’ve never done an all inclusive but they make it sound very appealing. I want to be able sit under a palm tree in the shade with my wife or lose my money in a casino with a drink. I don’t ask for much. I just need to give my Brain a break!

The Peaceful Warrior

2007-07-20T13:33:00.000-04:00

I went back to work Monday night and made it through my three days with no problem except being a little tired but that’s part of working nights.
After missing 4 weeks of work and opting to use vacation instead of sick time and getting into STD, my managers only took 84 hours of vacation from me, they’ve been real good to me. I’m lucky in that respect.
Things have settled down some after finding out about the scalp met. The rib still hurts but I’m waiting until August 8th for scans before I get too excited. It doesn’t do any good. I watched a movie last night called “Peaceful Warrior” I thought it was good and the message was to focus on the now, not the past, not the future. Easy to say but nonetheless a good message. Nick Nolte was in it, I recommend it.

The Gift That Keeps On Giving

2007-07-15T13:32:00.000-04:00

A few days after my return from the NIH while recovering, a right rib started hurting and still hurts. I suspect a bone metastasis. I can put my finger on it and if I cough or sneeze it all but knocks me to the floor. I went and had an x-ray done which didn’t show anything but that doesn’t mean much. All I know is it hurts.
Also while in the hospital I showed the doctors a bump on my scalp and they all said it was a cyst but agreed to remove it during the adrenal surgery. Well I got a call on Friday from the doctor at the NIH to tell me the cyst was RCC and that I need to come back to discuss further treatment. Yeah! I went from hoping to be NED to back in the saddle.
So now with the rib and the news about the cyst there is obviously some unwanted activity going on in my body. It’s really starting to piss me off. I’m ready to fight though, I am otherwise healthy. I worry about missing work, I just took 4 weeks off for the surgery and now depending on what treatment is recommended I’m sure I need more time off. I’m going to have to start educating myself on the disability programs available to me I think.
My younger Brother came to town last Thursday and left Saturday, so he was here for the news. He wasn’t happy but we managed to go to a Braves game and get real good seats. I had a few beers which I haven’t done n a long time. We had a good time, it was good to see him.

Back To Work

2007-07-11T13:31:00.000-04:00

Well, I did get the grass cut the other day…it was a bumpy ride but it’s done, now I have to muster the ambition to finish the wood floor I started before surgery.
I’m returning to work tonight, I work 6pm to 6am 3 days a week and have four days off. Tonight will be my friday and then I’ll have the four days off, my way of easing back into work I guess. I am a maintenance coordinator for Delta Airlines, I am responsible for a ton of things but mainly the goal is to assist the maintenance department provide a safe, reliable airplane to meet our flight schedule. It does get hectic.
My younger brother is supposed to be coming into town today. I haven’t seen him in a couple of years. He’s coming through on business but I’ll talk him into staying for a day or two. I’ve got my eye on a Braves game on Friday night.
I just posted to the Kidney Cancer List-serv inquiring on what a rib metastasis feels like. Shortly after returning home from the NIH I started having pain on my right rib cage. Feels like a pulled muscle but I can put my finger on a sore spot on one rib. It has me a little concerned but hopefully it’s nothing. I’ll talk to the doctors about it when I head back to the NIH for scans on August 8th.

Good Intentions

2007-07-06T13:30:00.000-04:00

Sitting around the house pretty much recovered I have plenty of things to catch up on but can’t seem to get motivated. These steroids seem to make me feel like Gumby, kinda weak in the knees and rubbery. Still I need to cut the grass and finish the trim on a wood floor I put down before the surgery.
Hopefully I can push through it and get something done today and this weekend.

Introduction

2007-07-05T13:27:00.000-04:00

Hello,
My name is Rick Harvey, I live south of Atlanta but am originally from Maine. I am currently 44 years old, married with 2 daughters 20 and 19.
In August of 2004 we bought a new house in the area and I did a self move with the help of some friends. Shortly after that I started having lower back pain. Not thinking much of it, I went to a chiropractor for what I hoped would be some relief. It only made the back pain worse and started tingling in my left foot. I also had some pain in my testicles so I went to see a urologist in November 2004. I got a prostate exam and some antibiotics but no relief so I went to a neurologist for the leg tingling. He immediatley sent me for a CT scan which revealed a large tumor on my right kidney. I took the films back to the urologist on December 23rd 2004 where he informed me that I had Renal Cell cancer on my right kidney and that it had grown out of the kidney into the vena cava and up above the diaphragm. I remember being stunned and had to sit down to absorb the news. I was 42 at the time, what a blow, why me? I was scared and cried. I called my father and cried to him over the phone. I just knew It would kill me. We did some internet research and found my 5 year survival rate was somewhere around 35 percent..not good. Surgery was scheduled for January 12th, 2005 at St. josephs Hospital in Atlanta. Dr Jim Libby (urologist ) and Dr. Averel Snyder (thoracic surgeon) performed the surgery.
January 12th, 2005…I was scared shitless. My whole family had flown in for the surgery. I received the annointment of the sick by a priest and cried like a baby. I got a shot of something in my butt and don’t remember much after that. I had to be put on full cardiac bypass in order to get the vena cava thrombus removed, so the chest got split open. In a nutshell the surgery went well, I was out of the hospital 5 days later, back home in time for the NFL Playoffs.
Pathology revealed Stage T3c grade 2 clear cell RCC. Not good odds for long term survival.
I was out of work for 6 weeks. In the meantime I found an Adjuvant treatment study being done at Emory University and got myself enrolled into it. It was a double blind placebo controlled study so I would not know if I got the drug or not. There were minimal side effects. I had none during 6 months of once a week infusions.
February 2006…I was notified by email of suspected recurrences in my abdomen and left adrenal gland by the doctor at Emory. I asked for treatment recommendations and they were very slow to respond to me. I immediatley started calling other cancer centers and doctors who were known to be RCC experts. I ended up getting a quick appointment in Houston with Dr. Robert Amato. We flew out and met with him. He did all his own scans and confirmed two lesions one in the abdomen and one on the left adrenal. Dr. Amato convinced me to enter into one of his studies involving dose escalated Sorafenib (nexavar) as part of a road map that he would create to keep me alive.
March 2006…I started the trial with the Sorafenib, had severe side effects involving skin rash, diahrrea and hair loss. But by the end of May there was no cancer visible, I had a complete response. I continued on the drug but could only tolerate the highest dose for 6 weeks. I was down to about 148 pounds and looked very bad. No quality of life. I continued to work but I was miserable. I pretty much insisted that we lower the dose to a level that would be tolerable but even at one pill a day I continued to have diarrhea. By November the cancer had returned on my left adrenal and my left back muscle. Dr. Amato gave me the choice to go back to the higher dose of sorafenib or move on to another drug trial involving RAD001(everolimus). I opted for the RAD as it was easier to tolerate. It pretty much kept me stable.
March 2007…I was getting tired of the wait times at Dr.Amato’s and tired of being on drugs so I sought some different opinions at MD anderson, a local oncologist and the National Cancer Institute. All three opinions suggested that surgical removal of these lesions would be best at this time. I was scared to stop the drugs but made the decision to enter a surgical trial at the NCI involving gold nanoparticles and TNF (tumor necrosis factor). I stopped the RAD on May 4th and was scheduled for surgery at the NCI for June 18th 2007.
June 14th 2007…went to the NCI for admission. Scans showed the adrenal tumor had grown and the back had remained about the same. I was hoping for a partial adrenalectomy. Dr. Libutti and Dr. Wargo were to do the surgery. On sunday June 17th I received the gold/TNF injection and monitored up until surgery the next day. I had no side effects.
June 18th…surgery went well except the fact that I lost my left and only adrenal gland due to it being totally consumed by the cancer. Now I need daily steroids for life. The hospital stay was good, I was impressed with the NIH.
I went home on June 23rd and am still at home. Pretty much recovered, still sore and tight around the incisions. I plan on going back to work on July 11th. I am scheduled back at the NIH around the first week in August for scans. Hopefully I am truly NED at that time.