I’ve been unable to sleep all night, having a lot of thoughts mostly about CEA. Plus I’ve got this 5FU bottle attached to me right now so that’s not helping. I’ve read a lot of old posts about CEA but wanted to share my specific situation to get feedback on not only that but also my treatments/current situation. To expand upon the information in my signature:
Diagnosed in May 2019. Colon primary, innumerable lung nodules, lymph nodes in the neck, abdomen and pelvis. I have had chemotherapy only, no surgeries or radiation. It’s to be chemotherapy for life. I just turned 37, this is crazy.
The primary tumor is located in the transverse colon right before it bends down on the left side. Pathology was “colonic mucosa with well differentiated invasive adenocarcinoma”. MSS, KRAS/BRAF wild, TMB 7.9. I have 9 mutations including p53. The lymph nodes in the neck were biopsied and positive. I have asked for the lungs to be biopsied but my doctor said it didn’t make any sense given they were so small and below the PET scan resolution and that the results would not change the type of chemotherapy she was ordering. The lung nodules will remain unchanged throughout my treatments.
CEA: 5/19 baseline- 13.2, 7/19- 3.9, 9/19- 4.3, 9/19, 4.8, 12/19- 2.3, 1/20- 2.5, 4/20- 5.4, 5/20- 9.9, 6/20- 11.7 (yesterday)
I started Folfox chemotherapy in June of last year and completed six rounds at max dose. No major issues with side effects, I cruised. Had a scan in October in which the primary and lymph nodes were shrinking and the lung nodules unchanged. However, they saw two new tumors in the liver (small but there). In the beginning, I asked my doctor how long this cancer was growing and she said 10 years. So I couldn’t understand how two new tumors in the liver could appear within four months and while I was on active treatment. She said they were probably there the whole time but missed on the initial CT and PET scans. Again I didn’t understand how that could happen since the CT was done at Lennox Hill and the PET at NYU, both reputable hospitals. I’m being treated at MSK now, btw. She then switched me to Folfiri with Avastin. Had another scan in December and the everything was shrinking, including the liver tumors. In January of this year, side effects became worse. I am now having nausea, vomiting, fatigue, etc. but the scans were good so I pressed forward. Another scan in March and at that time, the primary was down to 0.9 cm from 3.4 cm at diagnosis, lymph nodes continued to shrink and the liver tumors no longer seen. They resolved. Nice! Got a big hug from the doctor which I appreciated since she didn’t strike me as being into that but I’ll take it. I am continuing on with Folfiri and Avastin. Side effects becoming worse and at this point, I had dose reductions such that I’m currently at a little more that 70% of max dose. Additionally, I was given another anti nausea med in the IV, different anti nausea tablets to take home as well as steroids to take on days 2 and 3 of treatment. At first, I wasn’t taking them to see if the dose reduction was enough. It wasn’t and I was miserable. Now I’m taking everything. Another thing to mention is that since March, my treatments are spaced out to be every three weeks instead of every two in response to Covid.
Fast forward to today. I have had treatments 1-4 (19-22 overall) since the good March scan and I’m seeing a trend of three increasing CEAs. I’m very concerned, I'm panicked. Since the CEA of 9.9 in May, I have restarted the complementary therapies I had been doing this whole time but paused because of the pandemic. These are acupuncture, heat therapy and ozone. I’ve continued to take supplements. I went in to see my functional medicine doctor last week. We were doing expanded blood work, everything from standard CBC/metabolic to vitamins/minerals, thyroid, hormones, etc etc. on a frequency of every three months prior to all the restrictions due to Covid. I also see a second oncologist after scans to get her take and see if the treatment I’m being prescribed at MSK is aligned with what she would do. So far they are. But I’m thinking to make an appointment before the scan. I also see a psychologist weekly, facetime nowadays, and that is the one appointment I’ve always kept despite everything. I tried calling MD Anderson in Houston too but they are not taking patients seeking second opinions right now. I also got my scan moved up so its scheduled for the 23rd of this month.
I sent a note to the care team at MSK yesterday asking for an appointment to speak with my doctor about the CEA and moving up the scan to be even sooner. Still waiting to hear back. Lately, I only speak to the doctor when there are scans to discuss and speak to the NP in between. But I think I’d like to talk to the doctor now.
Outside of the 3-4 days during the treatment window, I actually feel great. The best I’ve felt since diagnosis. I’m cooking for myself and eating well. Sleep, digestion, mood, energy are all generally good. Since it’s nicer out, I’m getting outside to walk and ride my bike everywhere (no subway for me) but staying safe. I have a nice life for which I’m grateful. This recent CEA business has been a downer.
Thanks for reading. Please let me know what you think or if there’s other things you would like to know about me.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
TMB - 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin