Changes

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

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!

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!

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

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.

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

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.