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what to do when your immune system hates you

Medical issues


my current medical issues

Mostly for my records.

My major issue at the moment is that I was diagnosed with Stage IV breast cancer (with mets) in 2016. I am HER2+ on a slew of daily meds. I was on weekly Taxol for about a year until it started killing me faster than it was curing me. The doctor had to make some treatment changes at that point. Then I was taking Perjeta and Herceptin until recently when I was switched to Kadcyla briefly to qualify for a clinical study.

This is a very aggressive cancer, but it's also easy to dislodge with the proper meds. It's getting better and is generally under control except the brain lesions (because these meds don't cross the blood-brain barrier very well). This has caused a lot of neurological issues including memory problems, nerve damage, and one fairly bad seizure to date. I have anti-seizure meds, and I am not presently allowed to operate heavy machinery.

Radiosurgery is now complete, and I have clear scans.

I had been participating in a clinical trial, but had a severe reaction to one of the medications. Apparently I am not in the group who gets the minimal side effects. I officially can no longer have oral medications unless absolutely critical because my intolerances cause an immune flare-up when they hit my GI tract. (Why do all pills have the same filler "inactive" ingredients?) That leaves me with one critical medication, one medication which was being stepped-down anyway, and one antihistamine gelcap which does not presently cause a reaction. Infusions or other injections from here on out only for all other issues. I am going through my supplements asap to replace them with actual foods containing those vitamins or trace minerals.

My doctor and I are presently discussing my treatment options.

Other ongoing issues

  1. I had a PICC line installed when I was first diagnosed in 2016 due to all my arm veins collapsing (I have "rolling veins"). My body starting rejecting it around mid-2017, so it was removed and a Power Port was installed instead. Info about the port is on a tag on my keyring. The port itches a lot, mostly due to the sterile-field bandages. Even the sensitive skin bandages itch. I hear this is a common thing.
  2. I have dermographism [what's dermographism?], and not in the cute write-on-skin way. This has caused some spectacular rashes and hives, and to date has resulted in one course of steroids to get it under control.
  3. I'm hypoglycemic, which may or may not cause some minor seizures if my blood sugar levels tank.
  4. I have hereditary kidney issues. This limits some foods I can eat (foods high in oxalates are a no-go, for example).
  5. I have circulation problems, mainly in my hands and feet. If I don't keep the blood moving, I can't walk very well. I'm still determined to get around the main level of the house without a cane as much as I can, but leaving the house is something of a nightmare. Bad sidewalks are not safe.



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