Still Here!

Still here, still on the trial. I have been spending my summer either at doctors, on the sandy beaches, at the gym getting my strength back, or on my couch because of fatigue or nausea.

Lets talk Lucitanib. The trial has been tolerable. My bone pain is gone, which is an excellent sign. Considering I have not blogged since I started the drug, I am going to just give a quick breakdown as to what has happened during each cycle on this trial. FYI I am only on this drug for treatment of my cancer as I can no longer do oral holistic treatments, which in my opinion were only helping ward off side-effects of the other drugs I have been on.

May - Cycle 1 : [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• my blood pressure rose to 129/95, which is normal for the average Joe and high for the average Caitlin, but does not warrant a medication. 
• My heart rhythm and strength remain good. 
• TSH started to rise, but was not high to warrant medication. TSH is 5.4 (normal is under 5)
• I was still in pain in my thoracic region and also upper lumbar, but I just finished the radiation and just started the drug
• Markers: CEA - 140 (normal is under 5); CA 15.3 120 (normal is under 34)

June - Cycle 2: [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• my blood pressure stabilized at the Caitlin HIGH, average JOE normal
• Heart was strong & had great rhythm.... now I know the benefit of exercise, because my heart has been able to stay pretty kick butt through tough treatments. 
• TSH was elevated again, but not to warrant medication. still around 5.4
• Pain was much less in spine region & I was cleared to not just do yoga but lift light weights again as long as I was not in pain. 
• I started to get nausea from the drug. Nausea felt like the flu, lucky for me there are a ton of ways to take care of that - water, ginger, juice, ginger ale, Compazine, rest, snacks, and fresh air. 1st set of scans were done 
• SCANS: Stable, noted exactly where those damn rogue nodes have been for two years... two small nodes on my chest wall were still about 0.5cm in size & I had the pleural effusion. Bones stable. 

• Markers: Were mixed, its hard to see what this drug does to markers & given how my markers respond to treatment in the past - they go all wonky, get alll high and them plummet... but that always takes 4-5mo.  CEA - 150; CA 15.3 112

July - Cycle 3 [dosed daily with trial drug]

• my blood pressure unchanged, but I started getting adapted to my new normal. Less feeling like my heart was pounding & was able to do cardio again, so that helps a bit 
• TSH is rising... we are waiting until it gets into the "hey you have hypothyroidism, time for a referral to an endocrinologist"... TSH was 6. needed to be over 10 to get on any medication or what not.
• No pain, which was AWESOME. Cleared for moderate lifting WOOT and running (meh)
• Nausea remained, started to get tired, but that was all likely due to the thyroid. I was told to monitor for other symptoms. 
• Markers - Mixed, but this time the one that was high dropped and the one that was low rose. You know I can never be normal here. CEA 62; CA 15.3 182
• Fluid around my Left Lung was finally drained off after 2yrs. Hoped it would remain gone. The fluid did not appear cancerous this time and that was a good thing. Was told its a response to either the thyroid or scarring on my pleura for having the cancer in that region for two years. 

August - Cycle 4  [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• SCANS: Stable overall. The nodes in my chest wall had become invisible on scans, so under 0.1mm. The Pleural effusion is back (awesome!), but less as my lung is more visible with less "cloudiness". They saw a 6mm nodule on my lung, which its unclear if that was there before or new, but its newly visible. My bones are stable.
• Markers: My tumor markers have been up down up. The one that rose last month, rose again. The one that dropped last month rose like a few points, but nothing significant as per medical team. CEA 72, CA 15.3 is 211. They believe that the CA 15.3 keeps fluctuating because of the effusion and the hypothyroidism, which they believe are now connected and not related to cancer as there is no lymph node involvement in my pleura sac (lung sac).
• TSH is now 11, so I get a referral for an endocrinologist. In that time, I have become aware that I am cold all the time and then blessed for the hot flashes I get or the hot weather we have been having. Also my hair is coming out like a shedding cat. COOL!
• Pleural Effusion will get to be drained AGAIN. YAY! 

 So in summary, I was hoping that August would kinda put an end to the multiple issues or extra appointments beyond my monthly labs and/or scans. Now I have an endocrinologist in the mix and another visit to the intervention radiologist (pleural effusion drainer) on the calendar.

Have I mentioned that these appointments are all smashed between my palliative care doctor every 6month to evaluate my pain, my original oncologist in NJ to maintain follow-up, my radiation oncologist for follow-up, my OBGYN Oncologist for yearly followup, my dermatologist because every cancer drug has given me acne or some weird skin rash.... This is like the full time job I wish I never got.

Anyways, hope I make it to these appointments. Pray that my next labs show both markers dropping... Labs are due on Sept 3 & scans again on Oct 1.

So here is a detailed update, because I do not want to have to explain it anymore. More updates once I figure out my thyroid.