Friday

While I stayed in bed until noon with my left lower leg pain, mom broke out the Christmas decorations. With the trip rapidly approaching, we decided to keep the decorations to a minimum. This is the tree mom bought for her RV years ago. It's a nice tree, and easy to put away before going to D.C. in January. 

I want to say the pain isn't as bad as yesterday, but that could be I managed my meds better and stayed ahead of the pain. I can't wait to see how it feels tomorrow. Strangely, my back has not hurt while I've had the leg pain. Someone explain that. 

Thanksgiving with a side of ER.

Happy Thanksgiving. I'm spending some of mine in the ER. For the last 3 days I've had left lower leg pain. It's been a pretty sharp pain no matter what position I'm in. Had an ultrasound and there was no clot. Now I'm just waiting for the blood work. 

My phosphates were a little low, but they gave me a list of things that it could have been. One is nerve damage, and we know I’ve had some problems with my nerves. And trying to up my phosphates can affect other things like calcium. I’ll just have to manage my pain pills closely to make sure I stay ahead of the pain and not behind, especially on our trip.

We got home about 2pm and had a very nice turkey feast.

Postponing Round 14

I was supposed to start my 14th round of chemo, but my Oncologist decided not to. First, my CA-19 numbers shot up to 2000. Obviously the Oxaliplatin was doing the major lifting of the 4 drugs. We could have started the next treatment consisting of Gemcitabine and Albumin-bound paclitaxel, but because it is supposed to be an every week for 3 weeks the a week off, and I have this Germany trip in the middle of that, he decided to give me a break.

As for the clinical trial in Bethesda, MD we’re just working out a day I can go up for baseline tests and then figure out when to start treatments in January. I will most likely fly up the first few times until I know I won’t be kicked out right away. Then we will look for good weather to get the RV up there. At the moment I am looking to stay at Fort Belvoir just south on the Potomac River. Just down the street from Mount Vernon. There are no RV parks close to DC. All but one would take about 2 hours to get to the NIH by metro (for when the weather is really bad).  The one I wanted to stay at, Cherry Hill on the northern beltway would only allow us 90 days in a 12 month period. I don’t want to change RV parks if at all possible, especially in bad weather. I still may have a problem on the Army base because they say I can’t reserve another 90 days until I have finished the first one. In the summer this place probably fills up. I wrote the Commanding Officer of the base trying to play the sympathy card but haven’t heard back. I may have to track him down in person once I’m there. What do I have to lose?

Clinical Trial update

I spoke with the RN again by email and it looks like I will be able to start this clinical trial in January. We've got a lot of balls to juggle with the Germany trip, preparing the RV to live in for an unknown period of time, trying to find a long term RV campground, prep the house…did I leave anything out?

It's somewhat scary thinking I have to leave my home for an unknown amount of time, but it's necessary and this drug sounds very promising. It could end up being the frontline treatment after the trial has concluded. I'm hoping it outright kills the cancer cells. 

Had a great evening with the MRI crew at the 4th Ave Food Court.

Round 13 - teleconference

Had a teleconference this morning with a doctor at the National Institute of Health in Bethesda, MD. The drug for the trial is called ProAgio. He said it works by cutting off the blood flow and nutrient system. One patient they performed a biopsy after using the drug and the tissue was necrotic. Sounds like it killed he cancer to me. He still wants to see my latest CT and speak with my Oncologist, but he said I look like a good candidate.  

As for my current chemotherapy treatment, we think it has run its course after 13 rounds. We stopped the Oxaliplatin 2 rounds ago due to numbness and tingling I  have in my hands and feet. Because of that, my CA-19 numbers are going up and the cancer is growing albeit slowly.  

Time for change

Well shit. My CA-19 is up again to 587. It hasn't been that high since I started chemo. We did cancel one of the drugs (Oxaliplatin) because of my peripheral neuropathy, which the numbness doesn't seem to be going away. I'm guessing I will get one more round of this before we change our treatment plan.

This makes the trial in Washington D.C. seem more and more likely to happen. Mom and I have discussed the possibility of taking the RV and living up there until their trial is ineffective. Otherwise, I would have to fly up every single week. Knowing that a guy has been on it a year is very promising. That would give me plenty of time to see everything there is to see in D.C. 

Round 12 has been a little different. I've had some bowel issues. I didn't think it was possible to go from constipation to diarrhea in the same day, hours apart. The cold sensitivity in my mouth has diminished, which is the only good thing, but at what cost.