A quiet journal generally means that things are going well.
I went to San Francisco for my monthly check-up yesterday. As you know, I
had good scans last month (no new lesions, the rib lesion disappeared and mixed lytic (disease) and sclerotic (healing) lesions. The prior scan in January had no sclerotic activity, so the April scans showed improvement.
However, my carcinoembryonic antigen (CEA) tumor markers continue to rise and have now hit double digits. (The CEA is used to measure the presence and status of metastatic disease.) Given the current state of my disease, by definition, the CEA numbers should not be rising. The fact that they are baffles the medical team as I am almost 100% pain free (I'm not taking any pain relievers at all), show no new symptoms and have no indications of disease progression. The best we can do is to shrug our shoulders and say, "Gonna go with what we know and be happy with the current success." (It should be noted that CEA markers are also notoriously unreliable!)
My doctor is trying to get me into the Pfizer clinical trial for palbociclib,
taken along with letrozole (aromatase inhibitor). This article has
easy-to-understand information about it: http://www.empowher.com/breast-cancer/content/new-drug-advanced-breast-cancer-puts-tumor-growth-pause?page=0,0
Some of the difficulty in getting me into the trial is that they want
"first-line" treatment patients. Even though my treatment (Tamoxifen)
hasn't changed since my metastatic diagnosis, the administrators may not
consider me as a first-line patient. Additionally, bone mets only patients
aren't always desired for trials such as these because disease regression is
hard to measure. My oncologist has to present my case to the clinical trial
board for approval. (My friend who came out on May 1 thought I could possibly be a good candidate for this trial as well.)
I've been having some serious itching problems due to an adhesive reaction
after my surgery last month so now I have some good steroid topical cream to use. Hopefully, that will be gone in three days! I don't like itching!
My white blood count (WBC) remains a bit low, but no one is concerned about it. I have the approval to try taking bee pollen to see if it will improve the numbers. There are no negative interactions with my current treatment
plan, so it won't hurt.
I got the results from the genetic tests and I'm a negative for the BRCA1 and BRCA2 mutations. This is very good news for Rachel as that means she will not have the mutation either and her lifetime risk for ovarian and breast cancer is the same as anyone else. The genetics team does feel there is likely to be a hereditary factor involved (especially since my only female maternal cousin also was diagnosed with breast cancer in her mid-40's), but the exact link is not known as this time. I have blood banked for future research and my family can access it at any time as well.
I have finished my first notebook in my Bible project. I have copied through Exodus 37 . . . 257 1/2 pages! I had hoped to be able to fit all of Genesis and Exodus into this notebook, but alas, it's not to be! I have three very detailed chapters to go, so those will be in a new notebook with new pens. I'll save my overall impressions of Exodus for when I actually finish the book. (The photo is of the finished notebook on top, with my new notebook (orange) on bottom. I'm using the Message version of the Bible for my project, also seen in the photo.)
I continue to be grateful for each and every day of my life. This past week has been a reflection of loss of life for many, those known to me and those known to friends of mine. My heart aches in the entire loss experience.
I continue to be renewed by love, both giving and receiving. I know my love is flawed and probably comes across as conditional, but I don't mean it to be.
May I learn to truly love as Jesus did.
I went to San Francisco for my monthly check-up yesterday. As you know, I
had good scans last month (no new lesions, the rib lesion disappeared and mixed lytic (disease) and sclerotic (healing) lesions. The prior scan in January had no sclerotic activity, so the April scans showed improvement.
However, my carcinoembryonic antigen (CEA) tumor markers continue to rise and have now hit double digits. (The CEA is used to measure the presence and status of metastatic disease.) Given the current state of my disease, by definition, the CEA numbers should not be rising. The fact that they are baffles the medical team as I am almost 100% pain free (I'm not taking any pain relievers at all), show no new symptoms and have no indications of disease progression. The best we can do is to shrug our shoulders and say, "Gonna go with what we know and be happy with the current success." (It should be noted that CEA markers are also notoriously unreliable!)
My doctor is trying to get me into the Pfizer clinical trial for palbociclib,
taken along with letrozole (aromatase inhibitor). This article has
easy-to-understand information about it: http://www.empowher.com/breast-cancer/content/new-drug-advanced-breast-cancer-puts-tumor-growth-pause?page=0,0
Some of the difficulty in getting me into the trial is that they want
"first-line" treatment patients. Even though my treatment (Tamoxifen)
hasn't changed since my metastatic diagnosis, the administrators may not
consider me as a first-line patient. Additionally, bone mets only patients
aren't always desired for trials such as these because disease regression is
hard to measure. My oncologist has to present my case to the clinical trial
board for approval. (My friend who came out on May 1 thought I could possibly be a good candidate for this trial as well.)
I've been having some serious itching problems due to an adhesive reaction
after my surgery last month so now I have some good steroid topical cream to use. Hopefully, that will be gone in three days! I don't like itching!
My white blood count (WBC) remains a bit low, but no one is concerned about it. I have the approval to try taking bee pollen to see if it will improve the numbers. There are no negative interactions with my current treatment
plan, so it won't hurt.
I got the results from the genetic tests and I'm a negative for the BRCA1 and BRCA2 mutations. This is very good news for Rachel as that means she will not have the mutation either and her lifetime risk for ovarian and breast cancer is the same as anyone else. The genetics team does feel there is likely to be a hereditary factor involved (especially since my only female maternal cousin also was diagnosed with breast cancer in her mid-40's), but the exact link is not known as this time. I have blood banked for future research and my family can access it at any time as well.
I have finished my first notebook in my Bible project. I have copied through Exodus 37 . . . 257 1/2 pages! I had hoped to be able to fit all of Genesis and Exodus into this notebook, but alas, it's not to be! I have three very detailed chapters to go, so those will be in a new notebook with new pens. I'll save my overall impressions of Exodus for when I actually finish the book. (The photo is of the finished notebook on top, with my new notebook (orange) on bottom. I'm using the Message version of the Bible for my project, also seen in the photo.)
I continue to be grateful for each and every day of my life. This past week has been a reflection of loss of life for many, those known to me and those known to friends of mine. My heart aches in the entire loss experience.
I continue to be renewed by love, both giving and receiving. I know my love is flawed and probably comes across as conditional, but I don't mean it to be.
May I learn to truly love as Jesus did.
RSS Feed
