The Next Mountain to Climb

Since the last update I wrote myself, I’ve completed three immunotherapy infusions and I’m also taking a daily tablet. Fortunately, I haven’t experienced too many side effects this time around. I do deal with muscle and bone aches for about a week after each treatment, and I’ve also been having some intense headaches. We believe the headaches are due to the treatment causing my body to lose important nutrients—especially sodium and magnesium. As you know, I was actually hospitalized for a few days so the doctors could figure out what was going on and create a treatment plan I could follow at home. Thankfully, they discovered that my body was running low on these key nutrients. After receiving an infusion of sodium, magnesium, and potassium, the headaches became noticeably less severe and didn’t last as long—at least for a couple of weeks. Unfortunately, as those nutrients become depleted again, the headaches come back. So now, I get an infusion about every three weeks to help manage ...

Kristi is being discharged this afternoon. She continues to feel pretty good — especially compared to the last couple weeks. Doctors have given us a recipe of over-the-counter meds similar to the “cocktail” she received while in the hospital to help with reoccurring headaches if necessary.  The exact cause of the headaches has not been determined, but if one looks at the effects and side effects of advanced LMS and the immunotherapy treatments, it’s not that weird.  She’s feeling so much better, we decided to stop at our friend’s house for the night before heading home tomorrow. 

There is good news … keep reading.  Kristi continued to feel horrible Tuesday and Wednesday. She had a video appointment with Dr. Ganjoo late Wednesday afternoon — considering her continued poor condition Ganjoo wanted her to get to Stanford Hospital ER ASAP.  We left about 5:30pm and arrived at Stanford ER at about 9:30pm. They got her in a room so quickly. Over night they ran bloodwork, did an MRI of her head, and administered a cocktail of fluids, electrolytes, and medications.  By 8am today she was a different person. She’s even hungry and eating! The headache has all but fully subsided. The MRI — at least from what we can see in the report — shows only things we already know.  She has been admitted to the hospital — we think for observation, but we haven’t really talked to a doctor for a full explanation yet. Once she’s settled in a real room we should know more — she is still in an ER room.  We’ve said this before — while no one ever wants to be in the hos...

It seems like the side effects from the immunotherapy/enzyme blocker combination treatments have caught up with Kristi, and they gave us a little scare on Monday.  For about two weeks Kristi has been having unrelenting headaches, which seemed to ramp up over 4-5 days. The increase in headache intensity and a few other symptoms can be signs of a serious pituitary condition that can be caused by her treatments. Even though we had met with a doctor on Friday via telemedicine, Monday morning we were quite concerned based on our research and her symptoms.  We sent a message to Dr. Ganjoo, detailing what was continuing. Her team got back to us rather quickly and told us Ganjoo wanted us to go to a local ER for an urgent MRI.  Kristi’s bloodwork indicated very low sodium levels, also an indicator of the possible pituitary condition. So, after the MRI they gave her some IV fluids and pain medication. The MRI showed that there was just a little inflammation in the p...