On fb over the last couple of weeks, Siteman has been posting videos about what to expect at their various locations when you come in for appointments and treatments. Maaaaaybe this video helps to explain why some days are so long. =) There is other information on this page but about halfway down is the video that I'm talking about for the South County location, where I go most often.
https://siteman.wustl.edu/visiting/south-county/
Wednesday, May 31, 2017
Tuesday, May 30, 2017
Fanny is back in town
- Bloodwork, appointment with Dr. T and treatment (Folfori #1 - includes Irinotecan and 5-FU) at Siteman South County
It was a really long day today. We left home before 9 and we got home around 4. I don't know how or why things add up to so much time on certain days, but they just do. We made the decision with Dr. T to add 5-FU to this week's treatment of Irinotecan, so the 5-FU is being infused through a pump for the next 46 hours. We also talked about adding Avastin but we are going to hold off on that until we figure out exactly what we are going to do with my stent. The urological surgeon has talked with us about scheduling another surgery, to replace my stent with a shorter one that might not aggravate my kidney and bladder as much as the current one, which is causing a lot of bleeding. We can't start Avastin until after that possible surgery.
My bloodwork seemed to be a mixed bag. My ANC was in the normal range (thank you Neupogen injections), my CEA (tumor marker) decreased slightly, but some of my liver tests were elevated. The liver results could be side effects from chemo or they could be caused by the tumors in my liver... and either way, they could be permanent.
Saturday, May 27, 2017
Static would have been better
- Neupogen injection at the Cancer Care Clinic at Big Barnes
Being at the Cancer Care Clinic for 2 hours to get a 5 second injection might lead to some frustration... but getting the injection that I need today in order to get the chemotherapy that I need on Tuesday is important. #holidayweekend #livingitup
It would have all been completely tolerable except that the TV in my pod was stuck ON, it would not turn off and the volume would not turn down, and it was stuck on some cable news station talking about politics... for 2 hours. What was I saying about frustration?
Thursday, May 25, 2017
Sleepy
- Neupogen injection at Siteman West County
Hector is working from home today so it was nice to get a ride to Siteman. Unfortunately for the third straight day, getting up and moving around caused enough pain with the stent that it made me so nauseous that I vomited. This is not a good pattern.
Wednesday, May 24, 2017
Stented
- Renal scan and abdominal x-ray at Barnes West County Hospital
This stent is causing a lot of pain but according to today's tests, it is still located in the correct position and my kidneys are both draining properly. So, what the heck is going on? And what can we do about it?
Tuesday, May 23, 2017
Lab
- Bloodwork at Siteman West County
My neutrophil count is low so we'll go forward with our plan for Neupogen injections this week.
Friday, May 19, 2017
Thursday, May 18, 2017
My own advice: more cupcakes
I have had a much better days 1-3 this week compared to two weeks ago. Knock on wood. I feel positive about that. Except that I am losing a lot of my hair. As I have said before (when I've been asked about my hair 500 times), it's not a painful or uncomfortable part of chemo. For me, I'm just afraid that I'll lose some of the normalcy I feel when I interact with people I don't know. I like just blending in and I feel like my outside has always kind of blended in. Except possibly not recently with some additional weight loss. It's been a real challenge to maintain my weight. We talked about that with NP A on Tuesday as well and I got some more suggestions... so we'll how that goes.
Move it
It is important to eat healthy and to be active. So says NBC News and this recent study: http://www.nbcnews.com/health/health-news/colon-cancer-survivors-live-longer-healthy-habits-n761231. I'm not at 30-60 minutes of activity a day but I listen to my body and do what I can. Can't let the treadmill start collecting dust.
Tuesday, May 16, 2017
Less is more
- Bloodwork, appointment with
Dr. TNP A and treatment (Irinotecan #2) at Siteman South County
We had a good conversation today with NP A, who (whom? not sure) I hadn't seen in awhile. We're going to alter a couple of my support prescriptions to see if I can get through these next 2 weeks with less side effects. I'd really like that. After my first round, I experienced all 11 of the most common side effects (that affect more than 30% of users.) I didn't get any of the less common side effects... so I guess that's something.
The Neupogen injections paid off, as my ANC was in the normal range... so we'll repeat that pattern again next week before round three.
The Neupogen injections paid off, as my ANC was in the normal range... so we'll repeat that pattern again next week before round three.
Sunday, May 14, 2017
Overdressed for this place today
- Neupogen injection at the Cancer Care Clinic at Big Barnes
Come Tuesday, we'll find out if all these injections have helped...
Saturday, May 13, 2017
Friday, May 12, 2017
Thursday, May 11, 2017
Wednesday, May 10, 2017
Tuesday, May 9, 2017
Checking in
- Bloodwork at Siteman West County
Today's bloodwork gave Dr. T an idea of how the Irinotecan has affected my blood counts. And it looks my body needs some assistance in recovering, so he's scheduled 5 days of Neupogen injections.
Tuesday, May 2, 2017
Irinotecan
- Bloodwork, appointment with Dr. T and treatment at Siteman South County
We reviewed my latest scans with Dr. T - tumor growth and new tumors in the liver, tumor growth and new tumors in the peritoneum, tumor growth in the pelvis and tumor growth and new tumors in both lobes of both lungs. Basically (and as noted in the MRI and CT reports) - it is the progression of my metastatic disease.
So today I started a chemotherapy drug that has a 50% chance of helping. It is the best option available to me. There is a 20% chance that it will help to shrink my tumors, a 30% chance that it will help my tumors to remain stable and a 50% chance that it will not help at all. That's where we're at... 50%. And with that 50% comes the information that the average survival for patients who are in the place to need to start Irinotecan is one year. Of course that is just the average, some patients survive for years and some patients survive for less. All together, it is a lot of difficult information to process.
Irinotecan is often given with a couple of other drugs and the combination is referred to as Folfori. However, based on my low blood counts and the importance of being to get Irinotecan right away and every other week without interruption, Dr. T thought it was best to start just with the Irinotecan today and to add the support drugs as possible.
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