Still Tired but Trying to Focus on the Positive - Tumor Markers

I just sold my organic wool mattress topper - it was twin-sized that was on Eddie's bed. I've been trying to sell it for a couple of months.

I also got the newest tumor markers - they only take them every six weeks. Here are the numbers:

Here's the CA15-3.

Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL
July 2 2009 - 22.1 U/mL
Aug 3 2009 - 29.7 U/mL
August 31 2009 - 31.9 U/mL
Oct 3 2009 - 38.7 U/mL
Nov 2 2009 - 36.4 U/mL
Nov 30 2009 - 38.5 U/mL
Dec 28 2009 - 37.5 U/mL
Jan 25 2010 - 33.8 U/mL
Mar 8 2010 - 30.9 U/mL

I'll post the CEA numbers. Anything 3.8 and under is "normal".

CEA
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL

So, the CA15-3 went down by almost 3 points (maybe it was 30.7 U/mL), but the CEA went up 9.7 points in 10 weeks. My colleague found two articles about the CEA that says that a "spike" in the CEA does not mean disease progression. In fact, it might mean that the treatment is working since the CEA works on cells in the pre-embryonic stage and so the CEA measures the amount of dead cell matter.

My question is whether or not the numbers here constitute a "spike". From October to November, the number went up 1.9 points for 0.475 points per week. From early November (the 2nd) to December (Nov 30), the CEA went up 2.9 points, for an overage of 0.725 point increase each week. From Nov 30 to Dec 28, the CEA went up 2.7 points for 0.675 points per week. Then, from Dec 28 to Mar 8, it went up 9.7 points in 10 weeks, for an average of 0.97 points each week. Is that a spike?

Perhaps. Maybe in light of the fact that the CA15-3 went down 3 points combined with this "spike", I could interpret the numbers as indication that the treatment is working. However, my left lymph nodes don't feel like they've decreased in size. Does this mean that there's active cancer running around? Or, my body trying to flush the dead cancer cells out of my body?

Who knows?

In the meantime, I have sent paperwork to the UW Tumor Vaccine Group, that they will use to apply for travel funds for me from the American Cancer Society. I also talked to my local cancer center and so far, the Chaplain's office plans to give me $100, they have travel funds for clinical trials from the American Cancer Society via the Komen Race for the Cure Foundation, and they have some funds as well.

I estimated how much travel would be for one trip to Seattle and came up with about $450. That includes $120 for a train trip, $100 for food for two days, $200 for a hotel (unless they can get me a discounted rate) and $30-50 for taxi.

I have seven scheduled trips to Seattle - 7 x $450 = $3150. Yikes, huh? Let's hope they can come up with funding!

My scheduled dates are:

April 5 (4- hour visit, including informed consent process, history/physical, vaccine)
April 12 (vaccine)
April 19 (vaccine)
May 3 (leukapheresis - a four hour procedure in which they take out white blood cells)
June 30 or July 1 - I get my own white blood cells back via infusion.
July 8 - white blood cell infusion
July 15 - white blood cell infusion

However, if I am able to take sick leave during Spring, then maybe I can get my white blood cells earlier, over three weeks in June.

In other news, the King Island Native Corporation may want me to come up to their annual meeting next month to present on some of the work I've done. It'll be kind of hectic because it's on April 24, so there'd be a lot going on . .. I have to think about that just because of the timing.

Today, though, I was tired tired tired. I was okay for the first appointment and lunch, but I got more tired for the second meeting. And, I have successfully got more tired. So, tired that it's hard for me to focus on small print. So, I'm signing off - gonna watch American Idol - but maybe from bed. Good night!

No News is Good News

I've been silent the past few days. Part of it is that I really don't have any new news to report. I'm having an echocardiogram tomorrow - mostly because we need to monitor my heart due to Herceptin and Tykerb and I haven't had one for over 18 months - and partly because this is the last step before they determine eligibility for the UW immunotherapy trial.

I've also been silent because I have been fatigued in the evenings. Part of that is certainly due to my treatment but part is because . . . I've stayed up past 11pm the past couple of nights, watching TV and working or playing on the computer. Bad habit. My goal is to get to sleep by 10:30 or 11pm so I can get that extra hour.

Trying to work on small projects at work - I have an interview later this morning and then a lunch meeting. We're going to grab some soup over at the library - it's a fundraiser for Linn Benton Food Share and the staff brought in homemade soups. Mmm mmm good.

I finished my taxes last night and submitted them - I'm getting a few hundred more than I expected, which will go toward paying off my car, but also a little mini-vacation to the southern Oregon Coast next week-end. Eddie has a 5-day week-end so we're taking advantage of it!

Plus, I got a bit more on my insurance reimbursement for acupuncture than I expected - they also paid for herbs. I called them to make sure it wasn't a mistake and the person who helped me said not to worry - I may not get the herbs reimbursed next time. It depends on how the person processing the claim codes it.

We've sold about $200 worth of things on Craigslist - we meaning me and my family. We're selling all the furniture we don't need. It's enough to allow Dad to buy wood to make raised beds for the garden. We still have a lot of stuff in the garage to sell . . . but gradually, we're getting more and more room in there.

My swollen lymph nodes are no longer shrinking. They seemed to shrink a little bit (maybe from 5cm to 4cm). I'm just happy with the thought that they did shrink and I hope that my next Herceptin treatment shrinks them further!

Otherwise, I'm doing well. Tired, but in good spirits. I can walk around and see things sprouting everywhere. We're having an El Nino year, which accounts for our warmer than normal winter. Things are sprouting and blooming several weeks early. No complaints!