CSF you are Testing me!

Friday was an exciting day, or so we thought? My brain/spine oncologist announced that I had had a cerebral spinal test come back with no cancer cells. I was elated, surprised, but elated. There seemed to still be a decent amount of cancer in my cerebral spinal fluid in my spine from my MRI, but I am going off my eyeballs looking at something I am no expert in and I don’t know how much chemo it takes to knock that much cancer out. I was just excited to see that chemo had some kind of impact on the MRI. Any kind of impact! I needed something to work after the Methotrexate-chemical-meningitis-nightmare-hospital-stay that we call the month of August. I already ran through a CSF chemo. This chemo works the same as my body chemo, I take it while it works, when it stops working I move on to the next one and hope it works – I then stay on that until it stops working. If I run out of chemo options, I run out of treatment options. This is not somewhere I want to be anytime soon, but it is the reality of a #stage4lifer, unless someone has a lot of miracle treatments in the pipeline, IĀ will run out.

I am not sure anyone is even trying to test new intrathecal chemotherapy drugs at the moment… I should check. I know Herceptin has potentially been tested intrathecally, my cancer center is testing weekly high dose Herceptin along with Perjeta every 3 weeks for brain metastases that have progressed after radiotherapy.

Getting a second clear CSF test (CSF = Cerebral Spinal Fluid) meant I could move to getting intrathecal chemo (chemo in my ommaya port directly to my CSF) to once a week rather than twice a week. If the tests stayed that way I think there was a once a month option somewhere… maybe? I am fuzzy on the details, so I guess we will see how it plays out.

My little brother and I out enjoying a Real Salt Lake game this week (it was a tie :( )

My little brother and I out enjoying a Real Salt Lake game this week (it was a tie šŸ™ )

My doctor was going to do the switch if the next test came back without malignant cells, it turns out it came back with atypical cells, so they didn’t officially call it cancer cells, but the next test didn’t come back “all clear.” So again we wait, staying on the twice a week intrathecal infusion train.

I feel much much better than I did 3 months ago, but I am not running marathons just yet. The intrathecal chemo does make me a bit more fatigued (especially the day after). I am hopeful I will haveĀ mountains of energy if we roll back how often I need to get the infusions, but at the moment if twice a week is what it takes – twice a week is what it takes! I also am a bit more worn out at the end of the Xeloda cycle (I am assuming that is when my red blood cell count is low and my immune system is beat up).

I just finished my second round of Xeloda yesterday. I start my week off today, and start back up next Friday (this is the week my immune system gets to recover. So far I am not having too many issues with Xeloda (which seemed to be the case when I tried it before, Tykerb made me super sick though) *knocking on wood.* I swear cancer makes you superstitious! It always seems like celebrating good news surprises us with bad news and when we plan for bad news we get good news. So we are constantly in this cycle of planning for bad news hoping it will come out the opposite. Mike and I agreed this week that we are terrible at good news.

Tuesday I see my oncologist (we will also have the results of today’s CSF test). I am very tempted to go up on Monday and have them pull my tumor markers so we will have them Tuesday, they have been historically pretty accurate for me and I am overall anxious to hear how Xeloda is doing. That means one extra day at the hospital though, and I am not sure I need that much time at the hospital in my life… I guess we will see next week!

Author: Mandi

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