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.
Saturday, August 11, 2007
Tuesday, August 7, 2007
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.
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.
Thursday, August 2, 2007
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.
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.
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