My New Doctor

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

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

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

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

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

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

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

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

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

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

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

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.